The Day Before Thanksgiving

It just doesn't seem like it is this time of year already. I can't believe first of all how quickly the year has gone by, but also how quick the past 3 weeks have flown by. This coming week is going to go just as quickly since I will have my family here. It will go by all too fast, but I know I will enjoy every single minute of it.

I have so many things to be thankful for that I can't possibly list them here, but one of the most important things I am thankful for is the freedom to praise and worship my GOD in heaven for all that he has given to me. I am thankful for the experiences I have had lately because of the strength they have built on the inside of me. I was so worried and scared and upset when all this began and had not half the strength that I have now. I am thankful for a loving and caring husband who does his best to take care of whatever needs to be taken care of ... most of the time he has taken care of it all before I even think about it. He takes excellent care of me and the children and tells me a million times a day how much he loves me. I am very excited that he and the children are on their way here right now. I can not wait to see them !!!!!

My visit with Kadin today was good. I am really liking these good days. His blood gases are very good right now so they have turned his ventilator down AGAIN ... and I looked today on the rate he is breathing over the ventilator and he is now doing half the work. When they put him on the vent he was very tired and just let it do all the work. Now, 2 days later, he is up to half the work and I'm so very proud of him. He is wiggle bug, which again, indicates he is healthy and energetic. They have told me that babies that are sick and don't feel good just do not move. He is opening his eyes a lot more now which means he is having more periods of being awake. He opens them when I talk to him and he wiggles and moves around. I am so excited about getting to hold him tomorrow. The nurse said it will be for about 2 hours if he tolerates it well and to expect him to fall into a very deep sleep since he will be close to my heartbeat again. I am so excited. Danny will be taking some pics for posting so expect those at some point tomorrow if everything goes well.

I went to a support group meeting last night and it was awesome. It's amazing how many people have gone thru the exact same things that we are going thru. I was told today that Kadin will more than likely be seeing one of these Dr.'s for quite some time and that our family should consider a relocation in order to accomodate that. Wow. I'm not sure what to think about that. I guess we will see just how well he develops and progresses before we start thinking about that.

I learned today that it is ok for me to have caffeine about once a day. They are actually giving it to Kadin for brain stimulation and for lung development. So I went right to lunch and had a DP!!! YAY! Liked to have killed me, I am not used to the carbonation now since I have just about gone without them. I am drinking mostly water for milk production.

I am going to get caught up on what my children have in store for when they go back to school and then I will be blogging about that. I know Kota has a program at the bank on December 17th and Robbi is still playing basketball. She has a love interest also, and he's from McCamey. I don't understand these young long-distance loves but ok ... I guess so.

Thanks to all of you who have commented wishing us well on the job issue. Neither of us can believe that anyone can be that insensitive but like most of you have said, it will come back to him and he will remember the time he did not show any sympathy or compassion and he will wish he had. I really appreciate each and every message, email, comment, text message, or any other means of correspondence that offers support and love from all of you. I know I have said this before but if I don't write back, please know that it is not because I don't want to, I get so many that it is hard to write everyone, especially when the internet in my room comes and goes in the manner in which it does. One minute I will have it the next minute it is gone ... very frustrating. The messages I get are very encouraging to me and are part of the reason that I have gained the strength and stamina that I have - to know that some of you have been there and pulled thru and telling me what I have to look forward to in no time just blesses me beyond measure. Please keep sending me those bits and pieces of encouragement, I truly need it.

I have to get off this computer and do some laundry before the family gets here. I will try to continue to update while they are here, but as you have seen, when they are here, my time is undivided and I soak up all that I can. I will have more pictures to post later this week so keep an eye out for all of that.

Enjoy your Thanksgiving with your friends and family and know that I am praying for each one of you, that you will be given back all that you have given, especially to me!

I love you all !!!!
Leslie

Kadin as of today

This has to be quick. I am not picking up internet in my room so I am out in the hallway in a chair by a huge Christmas tree ....

Kadin was put back on the ventilator in the early hours this morning. He just got too tired. He is doing great though and his settings on the ventilator are even lower than they were before he went to cpap. They will try the bubble cpap again in about a week or two, depending on how well he is doing.

He is tolerating everything else really well right now. I got to change his little diaper today and take his temperature. It was difficult with all the wires. I was actually nervous!

When I went to see him tonight his eyes were open. It was so precious. He just looked around for me when I would talk to him. He got really squirmy so I stopped so maybe he would rest.
The Dr. printed a growth chart for me and he is growing right on schedule. The comment was made that most babies don't grow as well as he seems to be. Ok ... another huge positive!!!

My family is coming tomorrow. I am so excited! I miss them so much. We got a puppy and my nephew is going to "dog sit" for us, which I think basically means he is going to check on the puppy, make sure she has food, and take her to potty! YAY! His first "job" ... ha ha ha, cuz I'm gonna pay him to do it for us. He'll like that, I bet ...

Well ... I better get back to my room and do something. Not sure what. I'm a little restless right now.

More later ...

Bubble cpap

Quick update while I have a minute ....
Kadin is doing fabulous on the bubble cpap. He has had a couple of banner days now. They upped his feeds from 6 to 7 ml so now he is getting about 2 ounces every day. I can see that he is growing and Danny says he can REALLY see it being gone all week. They also removed the arterial line he had in his right arm. I am simply amazed at his strength. His strength helps me not to lose faith. I am so excited about all that is happening with him.
The dr. came in last night to see how he was doing while I was visiting with him. The way his eyes lit up almost made me cry ... wow ... he was nearly jumping up and down with excitement at how well Kadin is doing, but said he is not out of the woods on the cpap yet, he will need about 48 hours to make sure he does fine. So, at about 4PM tomorrow we should have a good idea of how he is going to progress with this. His oxygen requirements go up and down, depending on how tired he gets. I'm interested to see an xray of his chest to see if the moisture in his lungs clears up. The dr. said that the vent tube is a conduit for infection, of course, and it's very good we don't have that right now.
I'm so very excited!!!
Going to run to wal mart with a young girl I have befriended here at RMH. She is from San Angelo and alone like me. We have had a great time together.
More later ....

More

I can't believe how quickly last week passed. The weekend came and passed even more quickly than the week, of course, so at this very moment, I am sad that my children have come and already gone. I miss them so very much. It is the absolute hardest thing to stand there with your children crying and telling you that they don't want to leave you. My gosh ... THANK GOD next week is Thanksgiving and they will be here for a longer stay. I absolutely can't wait for that.

My family got here fairly early on Friday night. I was so glad to see their beautiful and handsome faces!!! This whole weekend is a blur because we were so busy. While I was waiting for them to get here, I had a visit from some hometown girls, Robin and Darla! I was sssooooooo glad to see them. They took me out to eat at a nearby Mexican restaurant which was so very good and then we came back to my room to visit for a little while before they had to go get some sleep for their classes that started Saturday morning! It was wonderful to see someone from "home" though and just to sit and visit with them. Robin is a paramedic and Darla is an EMT so they both understood a great deal about what I discussed about Kadin. Also, Darla has a nephew (I think) who was born very prematurely and he is 4 now and doing just fine! It is so encouraging to me to hear all those things like that.

God has sent so many people in our paths that have had dealings with either premature babies in their families, or they have known someone, or they were premature themselves. It is just astounding how that has happened. God knows I need those stories and encouragement that everything is going to be fine. It's as if he is showing himself to me thru others to say "Have faith!" .... It is amazing. Almost every day I meet someone or talk to them on the phone and they have a little bit of faith to spread my way. It is an awesome feeling ....

Friday night, Kadin's blood pressure started dropping again. The Dr. said it was because his kidneys were not putting out enough of a steroid for his body so he was going to start some medication to just jump start things again. They gave the meds at about 5:30 and by 1AM he was off the meds and doing just fine. He continued to do fine throughout the weekend. That baby is just amazing to me. I can't get over how well he is doing. We visited him a couple of times on Saturday but not for very long. Since the kids can't go back there we made our visits short. It was all uneventful really. We spent the majority of the weekend with the kids. We took them to the movies to see TWILIGHT (YAY!!!, no seriously, YAY!!!) and then we took them to ride go carts. We had a great weekend.

When we went for our visit today to see the baby, we walked in and said hello to the nurse. She said we were going to have a BIG day for Kadin today. I was like "Huh? Surgery again????" I just could not imagine what was on the agenda. But she said no, it was that they were going to take him off the ventilator and try him breathing on his own with what is called a "bubble cpap" ... it uses pressure from bubbles in water but it does not do the breathing for him. We called after they did it and they reported he had been breathing on his own for about 30 minutes but tht they had him up higher on the oxygen than they liked to have babies so they were just watching him for a little bit and that the Dr. was right by his side and if he failed at breathing they would put him back on the ventilator. So, I am going over in just a few minutes to see how he has done. Now that my family has gone home and I have sorta kinda pulled myself together, I will go back out in public.

My husand and children will be back on Wednesday since this is Thanksgiving Holiday week. I CAN NOT WAIT !!!!!!!!!!!!!!!!!!!!!!!!!

Just wanted to get an update since I haven't in a few days. I hope you are all doing well .... drop me a line !!

Love,
Leslie

Hospital Rule Number 1

Never sit out in the lobby all alone with soft piano music playing and look thru the pictures on your camera of your newborn baby and the rest of your family. No ... don't do this ... it's grounds for a bawl fest. :)

Everything is looking up. Kadin seems to be on the upswing from the surgery. When I went to see him this morning, I could see immediately how well he was. He has improved tremendously in the past 24 hours. His vent settings have come down ... 34 breaths a minute instead of 50 and 60 like he had before. His feeds have increased from 1ml to 3ml now. His blood gases are very good which helps them change the settings on the vent. I just have nothing bad to report today. PRAISE GOD!

This picture is Kadin right before surgery at Cook Children's Medical Center. >>>>

I'm just glad he has not been having these episodes where he clamps down and doesn't breathe or have a heartbeat. He did this like 4 times since Friday night after his surgery. They have to "bag" him and give him oxygen and pray his heart restarts. I think the longest episode they said lasted about 45 seconds but that it doesn't damage him, it is just scarey as the day is long !!!! He did it once while I was there and that was about 10 seconds, but it was a very long 10 seconds !!! Don't want anymore episodes like that. The nurses told me that unfortunately it is pretty common for a baby to do this after extremely stressful situations, or during, such as surgery or even infection. They don't like to see it but they are well trained to take care of it should it happen!

This morning when I went to see him, I walked up to his bed and started talking to him. He opened his eyes and just looked in my direction for quite awhile. I kept talking to him and he squirmed around. But he just looked so alert, so interested in knowing mommy was there. It made me cry, of course .... because the nurses say he doesn't do that with them. I wish I could be by his bedside for 24 hours every day. They have his arm "tied down", it's actually behind held to the bed with a huge safety pin so that he does not damage that arterial line, but anyway, he hates it, so he pulls his arm sometimes.

<<<<<>

This evening when I went over, he was ON HIS TUMMY! Yes, the nurse put him on his tummy and said HE LOVES IT !!!! She said she could not get him uncurled off his tummy last night cuz he loves it so much. He is resting so very well like that, and it's probably because he is really snug like he was in mommy's tummy. I finally could see his incision and wow ... you can't even tell it was there. I mean, you can see it a little bit, but it is almost like it was never there. It is about 2 inches long too. It is simply amazing !!!! I forgot my camera for tonight's visit but the nurse on shift took some of him on his tummy for me. His head was turned away from me so I went to the other side of his bed and started talking to him and again, he opened his eyes and tried to see me. I swear this morning he smiled at me ....just melted me !!!!! I got "kicked out" of the unit tonight because they had a new admit coming. Something serious happened, not sure what, but as they were preparing for that baby to come in, someone in the lobby was having a complete breakdown over it. It was horrible ... very emotional. I just pray everything was alright. You never like to see that kind of thing, but unfortunately, that's what happens in an NICU. I did find out from a girl I have befriended that the unit lost a baby yesterday. The baby was one of a set of triplets .... really stinks to hear that but makes me feel even more fortunate that my baby is thriving the best he can at this point.

I am sleepy and need some more rest, even tho I took a 3 hour nap this afternoon. I am exhausted, still .....

It's beginning to look a lot like Christmas!

..... and I'm not really ready for it.

The entire place here at RMH is decorated. I mean DECORATED !!!!! It's how I would want my house eventually. Every window, every door, every room has a tree, FABULOUS! It brightens the spirits a little and I can't wait for my children to see it. Wreaths everywhere, lights, ribbons, sparkles, etc ... Snowmen, huge Christmas balls, colorful lights, garland, candy canes ... need I say more? I am going to get some pics and show you.

Kadin is doing well. He did that "thing" again where his breathing and heart stop for a few seconds. I was there this time. Scarey. Don't want that anymore, please. He looks really good, seems to be growing to me. He has changed. I love it. The nurse we have had the past 2 days is wonderful. We have a bond. We are a lot alike. She is precious and I hope she comes back, but rarely do we see the same nurse twice.

I wanted to take a minute to thank all of you who have sent me cards....

Beth, I got yours right after I moved to the RMH. The volunteers at the hospital took it to the NICU for them to deliver to me when I got there ... The pics of your animals was good for me. I enjoyed them so much!

Tracey, I love you so much. Thank you for the card and for making my day yesterday. It means so much that you would take the time to write me. I appreciate the prayers.

Kirsten ... same to you precious girl. Thank you so much for the card and the picture of Kadin! I absolutely LOVE the picture and will carry it with me always. I was so excited tonight to find it in my mailbox.

So I am going to finish laundry and find something to eat. Have a blessed evening everyone ...

Lots of love,
Leslie

No real changes except for a climb upward

As of right now, things are going ok. We had the one major setback, surgery and the night that followed, but as of Sunday, everything has been ok. The only thing now is just facing the preemie issues that go along with having a baby at 24 weeks. It's a struggle, that's for sure.

I was with Kadin almost all morning and afternoon yesterday. I just did not want to leave him. I did go eat lunch and relax in the waiting room for a little while. He had a little trouble while I was gone. They said his heart stopped. Something about a bronchial spasm that can cause that. It's brief and does not do any damage, and all they want is for the heart to start again. The nurse said the episode only lasted about 45 seconds and that this sort of thing was not uncommon for a preemie baby. He is classified as an "extreme preemie".

Again, he is still off all the medication. His ventilator support is having to be tweaked ... lowered actually ... because he is doing so well on his own. He is almost down to breathing room air, no extra oxygen, he is peeing well, and they started his feeds again yesterday. 1 ml every 3 hours to build him back up again. He is restless and does not want them touching him. He is still minimal stimulation but the nurse yesterday let me lay my hands on him for a little bit.

I guess maybe I might get to talk to the Dr. this morning. I am early enough maybe I can catch him. I've been up since 6 taking care of business. It seems I am more busy here than I ever was at home. Or maybe it's just that I loved my routine at home.... ???

I understand my little boy is missing me pretty badly. I can't wait to see him again. Just a couple more days! He called me several times yesterday. I just love to hear his sweet little voice! My daughter played her first basketball game last night and won. She called me as soon as it was over !!! And I missed it ... dang it. Sucks ...

I think I have seen more pregnant women since being here than I have ever seen in my life. It is so hard to not get angry when I see them. I know they are blessed, but I am still trying to get over the feeling that Kadin and I were robbed. Maybe one day I will get past that, but for now, it is hard to see mommy's walking around with their blessing in their tummy, it's hard to see mommy's being wheeled out of the hospital with their new baby in their carseats. I know God will help me thru it, and I will get past it, but it's a difficult process.

I am about to go see the baby so I will update when I can later. Have a blessed day and count your blessings!

Love,
Leslie

It All Runs Together

I realize I have not updated in a couple of days. There's a very good reason for that. I have been extremely busy and totally exhausted. I have not slept much ... all to my detriment ... but sometimes things just get to me.



I was told Thursday upon my morning visit with our Dr. that Kadin was requiring heart surgery to close the PDA valve on the outside of his heart. They had given him medication to close it, and it appeared to have been closing, but did not get closed completely. It was now causing some issues in the lungs with backflow of blood settling in the lungs and causing it difficult to breathe, thus requiring more help from the ventilator. Ok, lots of repeats here, but I realize some of you are new to reading my blog so I want to cover all bases here ... sorta.



I called my husband to tell him that our baby needed surgery and he was just beside himself. I don't know at what point the decision was made, but he made the decision to come to FW to be with me as soon as he got off work Thursday. I was so surprised and so happy that he was coming. It worked out perfectly because the surgeon ended up pushing the surgery back several times to finally being able to perform it on Friday at around 7PM.



It all went well ... he seemed to be recovering ... until about 10:30PM last night. He crashed. It all went to pot in a matter of seconds. Literally ... SECONDS. My oldest son, his dad and stepmom had come to FW to be in town for my son's cheer competition in Denton today. So they decided to stop by the hospital and let JT see his little brother and to drop off some gifts for Kadin. My son and I went back to see the baby and we weren't there but for a few minutes when they asked us to leave so they could get some xrays. Kadin had already been put on a blood pressure med earlier in the day because his blood pressure kept dropping. It bottomed out while my son and I were in the room with him. So they asked us to wait out in the waiting room for about 5 minutes. Those 5 minutes turned into more than half an hour. We were scared and nervous as you can imagine. JT had to leave so he could get a homework assignment completed and then go to the motel with the rest of his team. Before they left, his dad Bryan prayed for Kadin and all of us. Danny and I then went to be with the baby and it was the scariest thing I have ever witnessed. My limp and lifeless baby was just there in his bed. Tubes were everywhere since they had now strung a total of NINE medicines to attempt to keep him alive. This included some insulin since his blood sugar was also too high. So now he was having 3-4 different blood pressure meds, pain meds, insulin, steroids, and a variety of other things being pumped thru his body. The Dr. started talking about how he was not responding very well to the medication to raise his blood pressure but that there was still hope ... His profusion was good, he was peeing good, and a few other things that I don't really remember ....



The Dr. said a few things that led me to believe that our baby was critically ill. Well, first of all she said he is very very sick. She said she has seen babies sick before, but he was the worst she has seen in a long time. The good thing was they were not having to do CPR at this moment. I was so upset. My husband was upset. They had me sit down in a rocking chair and he knelt down beside me and we just sat there. Tears rolled down my face and I heard him sigh quite often. The team of RN's, the Dr., the Respiratory techs, ALL of them were working so diligently to save his life. Between that and prayers ... it worked.



I am proud to say that he is doing wonderfully today. His blood pressure is holding it's own and he is not on any support from medication for that. THAT in itself is wonderful news. His blood gas reports are coming back excellent and they are able to turn down the ventilator some more every time. He is being weened off the insulin, also. He was receiving some more blood earlier tonight but that, again ... is not unusual and very par for the course in his situation.



He was resting when I went to see him this evening. They had given him a little bit of morphine to calm him down. He was really misbehaving before I got there. His body looks somewhat swollen from all the fluids they were pushing, but it is getting better. They are putting some antibiotic creme onto this feet and legs and I was glad to see that. He was peeling and it just looked bad. He got a paci too and he likes it. I can't wait to see him tomorrow ....

While we were at Cook's, we got the message that my husband's nephew's son (whew!) Michael, who is 14, had been admitted to the hospital with some form of leukemia - I believe they were waiting for the tests before they said definitively, but that is the suspicion. So we walked around the hospital trying to locate Danny's nephew Gary Don and his wife Angela and we finally found them. We had it so bad, but glad we were there and could at least see them and Michael. Michael really seems to be in good spirits about it all. He was just mad he missed his first plane flight because they drugged him up! lol So I guess we'll wait and see how all that turns out. Please pray for them ......

Well, wow, I am sssoooooo sleepy but wanted to get an update on here since it had been 2 days, or something like that anyway. We ran over to Denton real quick to see my son compete this afternoon and then a quick run back before the kids had to go back home. I hate this arrangement but am trying my hardest to make the best of a not so good situation. I just can't wait to take Kadin home and have a normal life again.

OH .... lemme say that the bake sales were great. I am so grateful for everyone who contributed and who worked the sales for our baby's benefit. I just can't say enough how grateful I am for it all .... THANK YOU!

I really enjoyed seeing my children this weekend too. It is still quite an adjustment for them and for us all, but we are going to manage and make the best of it. The kids are making this their "home away from home" when they are here and I am enjoying it. It is still somewhat stressful at times, but until we are used to this routine I expect that. It will get better ... it has to.

Thanks for your prayers still and all the support you all have given to us. It means the world to me that all my friends and family and our community have pulled together to be there for us during this uncertain time. I never dreamed we would be here, but here we are and by the grace of God, we're gonna be just fine!

Love and Blessings to you all,
Leslie

Surgery .... so far so good.

I know I have not updated at all today and that is because we have been at Cook Children's Medical Center all day long. We were orginally scheduled for surgery at 8am and were told to be there at 7 so we could speak to the surgeon and the anesthesiologist, but not soon after we got there we were told it was postponed a little because the Dr. had been in surgery until 2:30am and had not been heard from at that time this morning.

We decided to go eat breakfast and wait a little while until he came in, but as the day progressed and the surgery kept getting pushed back, we decided to just go to our room and wait. We were not in our room very long when they finally called at 4:15 to tell us we needed to come over and take care of all the consents and other things.

We did not wait very long after arriving until the Dr. came to talk with us. He was very positive about the surgery, explained everything in fairly detailed terms, and then we met with his anesthesiologist. Since I had not scrubbed in this visit, I got to just take a quick peek at Kadin and tell him I loved him (thru teary eyes, of course) before heading back to the waiting area while they continued to prep him. They did his surgery right in his isolette! The whole cardiac OR team for preemies was at his bedside. They all assured us they would take good care of him.

We sat in the lobby and talked to my Aunt Rose for over and hour before Dr. Tam's physician's assistant came and told us that the Dr. was still with Kadin but that everything had gone just fine.

We were able to see him within about 15 minutes. He was paralyzed from the meds and I did not really like to see that. His little hands just fell to his side, and of course, I put them on his tummy. Daddy took his temperature and I changed his diaper. The RN's at Cook are very "hands on" and very interactive with the parents. So many people came and talked to us today that I can't even begin to remember them all, but one I won't forget is the Chaplain DOUG, who prayed with me last night and then again with us today. It was nice ...

When we went to see Kadin, we expected him to be doing a little worse than he was prior to his surgery. The nurses had told us that this surgery was not a quick fix to his issues and not to expect anything when it was over. The recovery would be several hours, but also his improvement would span over the period of several days. I was confused when they told me do not expect immediate results ... ok, so we didn't, but that is what we got. He was requiring less help from the ventilator, his blood gases were down significantly, so I am believing that this was just the fix that he needed to get him regulated and back on track. If he does well and they can ween him off of the ventilator, he will then get a bubble cpap which actually is very good for him. He has to be doing very well for that though ......

So, I don't know if I put everything in here since it feels like I am writing thru sleeping eyes .....I probably won't even remember writing much if any of this.

Good night, I am so sleepy right now ..........

8am

Kadin's surgery was rescheduled for tomorrow morning at 8AM! My husband is driving up tonight to be with me and the baby tomorrow during this. I am so thankful. The NICU at Cook Children's Medical Center is so large, I felt lost in it. They could tell, lol. They were very comforting there and explained EVERYTHING. The nurses also told me just how wonderful and good Kadin looks for being born so early. They mentioned he moves well, he has no bruising, he is formed perfectly, and he seems to be alert when he isn't sleeping. I was so glad to hear this ....

He did not like being moved to another location. Before he was moved, I was talking to him and praying for him and he kept opening his eyes and looking at me. Of course, they tell me the rods and cones in his eyes are not developed, but that baby was looking at momma, I just know it. He doesn't open his eyes for the nurses, they tell me. I was holding his hand and talking to him. Seeing him look at me is amazing. I just can't explain it.

The NICU nurse at Cook's told me they are going to shut down the NICU in the morning for his surgery to be done at his bed. They will wheel all their equipment from the OR into the NICU and perform his surgery right at his incubator. Anesthesia will come administer their stuff and monitor thru surgery, etc .... so I thought that was really neat. Danny and I will meet with the surgeon and the anesthesiologist in the morning, sign some consent forms, and wait in the waiting room.

When they first took him to Cook's, the nurses there gave him a pacifier. Of course, it was a TEENY WEENY paci, and it was ssooooooo cute. My little baby actually sucked on that. They noticed he was sucking on his ventilator tube so they gave him that paci and he loved it. I cried and cried watching him sucking that. I could not believe it. It soothed him. It's probably what he has needed all this time. I just wonder if at the other hospital they will give him one to soothe him there. So far, I haven't seen one there.

So, right now, I am going to grab a much needed nap. I finally ate some food this evening. TWELVE BUCKS WORTH OF FOOD! And I ate every bit of it. I could not believe it. I was hungry. I needed energy, but now I am sleepy and need a nap. It is going to be an early morning for us to be there at 7AM so I need all the rest I can get.

Thanks for your prayers and please continue them. I will update as soon as I can on the surgery and Kadin's condition. The bake sale is tomorrow too and I'm excited about that. I was told our baby made the local newspaper - I can't wait to see that article !!!!! I may try to get it on here somehow .... not sure how.

Have a good night, and bless you all for continuing to come read our updates and pray for our son. We are so very blessed.

Love,
Leslie

Surgery today

Our precious baby boy is having surgery today. I met with the surgeon's physician's assistant along with Kadin's Dr. at my morning visit. He said that this whole in his vessel appeared to be closing but isn't closing on it's own and surgery is required. Such a change from yesterday's news .... He told me yesterday there wasn't a Dr. who would touch a baby this small, but then today he tells me that this is a very common surgery for babies this small. Maybe I am just not hearing him correctly, I don't know. I feel like I am, but I am so tired lately that I could be misunderstanding him. Anyway, he will have an incision on his chest and the surgeon will stitch the hole closed and this should eliminate some of the issues he is having with the lungs. They said he will probably get a little sicker after the surgery but that he will start to improve. They said they look for him to do well with this according to how well he has done until now. There are risks involved as with any surgery, but the percent is small ... like 5% chance of bleeding, infection, or even loss of life. So I came to my room to make a few phone calls and post this update for any of you that might see it in time to pray for us. I will be at the hospital (Cook Children's Medical Center) with him while he has the surgery and when he comes back to Harris Methodist. Not sure how long that will be. I guess it just depends on how well he does.

I am a nervous wreck but not falling apart at this point. I really do appreciate your prayers, they help get me thru this. My husband wants to be here and it is killing him that he can't be. He will be here tomorrow with the kids, though.

Thanks for your prayers and continuing support ..... We love you all!

I don't like rollercoasters!

All my days are starting to run together. I went to see our baby boy this morning and was updated by the nurse that was on duty at the time. She seemed very knowledgeable about what was going on and pretty much gave me the same report the Dr. gave me later.

It seems today's mood about the baby was not as positive as it was yesterday, but I am going to keep believing it is all good. They keep telling me they have never seen any 24 week old baby born without all these issues. I understand that, but I think my baby is going to surpass all expectations of this NICU. That is not being unrealistic, I just pray for good things for my son.

I was unaware that medication for this hole in my baby's heart vessel had already been administered to him on his birthday. No one said anything about him already receiving medication. The Dr. told me today that they did another xray of his chest this morning and it appeared that there was more fluid on the lungs than yesterday. They are still giving him medication to pull that fluid off. This means he is tee-teeing a lot more. So, since his lungs showed more fluid, the Dr. ordered yet another echocardiogram to look at the vessel again. When he came to update me this morning, he did not look or sound so positive about all this. He said that there is not a Dr. out there that will do surgery on a baby this young to fix/close that opening if it needs to be closed. The nurse told me that she has seen babies this young go to the OR for surgery on this issue. She also told me that Dr.'s don't like to give a second round of the medication for closing the opening. So, there is some information that I missed out on somewhere along the way. I will cover this with the Dr. in the morning when I see him.

They have upped Kadin's feeds to 4ml instead of 3 and he seems to be doing well with it. The nurse also made sure I knew that at some point babies will have trouble with their feedings and they will be stopped. This I have never heard from any of the other nurses before. She also said she didn't know what I was eating but it was giving him gas really bad and making his bottom raw, so they were having to put Desitin on his hiney. Made me feel really SMALL!!!!!!! I am trying to stay away from spicey foods, fried foods, carbonated drinks, etc .... So I don't know. I know that made me feel like complete crap! I don't want my baby suffering because of me in any way. I've already done enough to contribute to what he's going thru ...

The nurse told me that brain bleeds were a big problem and it was such a blessing that Kadin does not have any. She said I should be praising God that he is perfect in that area. Little does she know, me and God talk all the time! lol I think she was just trying to be helpful to me. I had never seen her before and she told me she is only there one day a week.

Kadin's blood gases were good but not enough to lower his support on the ventilator. He is still about medium on that. He is not requiring the max help from the ventilator, but he's not at the lowest point either.

My heart broke tonight watching him get his diaper changed. She told me earlier in the day that he absolutely does not want you in his bed, doesn't want you to touch him or anything and he throws a fit when the nurses get in there with him. So she started changing his diaper and he started throwing his arms and legs around and I looked at his poor face and he was making a crying face, but nothing was coming out. I felt so helpless. I teared up and fought breaking down right there in the NICU. Oh my gosh .... that face. I only want to see that face when I can grab him up and comfort him. He HATED what she was doing. I hated watching it. I just wanted to hold him, make him feel better.

It's only been 9 days and I am flat exhausted. My days are running together. I pump every 3 hours so I nap when I can during the day and then wake up in the middle of the night and pump. I handled this type of routine much better when I was home with a newborn. The baby woke me up to tell me when he was hungry, I changed his diaper, loved on him, and nursed him, then we both went back to sleep. It's hard to wake up to a whining alarm clock. The alarm clock isn't very warm to hold and certainly doesn't look up into my eyes for comfort and love. I feel so cheated. I know when we get to bring Kadin home it will be like he is a newborn. He should be the size that he would have been at a full term birth. I am praying we can take him home a little earlier than February 23. I want him to exceed all the expectations of the Dr.'s and nurses. I want them to remember KADIN ISAIAH KIRKPATRICK as the one who left them amazed. Guess we'll see ....

My son called me tonight. He is ssooooooo excited about coming to see me this weekend. I need his little hugs and kisses, those precious arms wrapped around mommy tight, those handsome brown eyes looking up at me in such a loving way. And my daughter, too .... The way she holds my hands and says "I love you mommy" ... yeah, melts me quickly!

And then there's my husband ... and all those thoughts are private! lol

I pray we have a better day tomorrow and everything will iron out with Kadin. It has to ... I won't settle for anything BUT that.

Blessings . . .

A few of my favorite pictures!

Still learning how to operate this blog and I have not found anywhere to put pictures, such as an album or anything. I am not familiar enough with this to know if there is a photo album ... So these are a few of my favorite pictures!

Video on Myspace

I was not able to upload the video here on this blog. I am not sure why. My connection may have something to do with it. However, if you want to see a very short video of Kadin (well, mostly of his little footie!) you can view it on the front of my myspace page! I think most of you have that url but if not, it's www.myspace.com/redlady88 and it's on the right hand side near the list of friends!

You can't see his little face cuz of the sunglasses, but you can see his small foot in comparison to my hand. He's so precious.

Enjoy....

Missing Home

My visit with our baby boy tonight was good. He was just resting. They call it “behaving” … so cute. They ALL do it. He is back under the light so he has to wear his “sunglasses” which I have decided I hate very much. I can’t see his precious face with those things on! It kills me to sit there and watch my little baby lick his lips. There’s junk on them and I just want to clean him up. His little feet are peeling, which is not out of the ordinary, but I want to clean him up. Motherly instincts I guess. It just bothers me.


I sat with him for awhile. He moved around quite a bit. I got some video of him moving around and will post that, but I believe I will have to post it on Kadin’s Journey and not on myspace. I can imbed it into the blog entry on Kadin’s Journey. Guess we’ll see. If it’s not there, you’ll know it did not work.


I know it takes only a short period of time for a mother and baby to bond when a baby is born at term. That is due to the mommy getting to hold and nurture the baby, meet their every need by changing diapers, nursing, swaddling, etc. I feel a bond between Kadin and I similar to that of an on time baby … it’s different though, and I’m so glad I have had those experiences with my other children. I’m just saying … I long to touch him, hold him, change his diapers, bathe him, feed him, take care of him every minute of every day and I’m not getting to do those things. Hormones raging doesn’t help either. I burst into tears just thinking about it. I will be so grateful when I can actually do those things. Our bond is there, though. As I have written before, he responds to me when I touch him or when I talk to him. It hurts me more now to leave him than it did in the beginning as I was trying to process all of this. I need to be touching him. I feel it is a reassurance of some sort for us both.


All this reminded me about the other day when I was discharged from the hospital. They wheeled me out in a wheelchair, as is hospital policy. Danny went to get the truck while I waited with the attendant. When he pulled up, we started loading my things into the truck. I opened the front door and was hit right in the face with the smell of our truck. It brought me to tears. It was “home”. I had not seen outside in several days and now to be getting a smell from “home” was almost more than I could take. My reaction brought tears to the attendants eyes which almost made me feel like a big dork. I didn’t care really, it was a sweet sensation ……


The NICU sent blankets and stuff home with me to wash. We provided some blankets for Kadin’s incubator. It helps kinda decorate his bed and personalize it somewhat. The nurse told me that any of his blankets can’t go to the hospital laundry or they’ll never been seen again. So I will be washing them here and returning them for him…


My family is coming back this Friday. I can not wait. I have been counting down the days ever since they left. My husband is such an inspiration to me. He is so uplifting and encouraging, always positive. He is such a sweetheart. I don’t think I could have ever made it this far without his love and support. I realize not everyone has the kind of relationship he and I share, so I do know how very blessed I am. I miss him being here with me to help me get thru … Him helping me get thru helped him to get thru … does that make sense? He keeps in touch with me all day long via text and phone calls. He checks on me for no reason. He reassures me we are going to make it thru this with flying colors. It is hard on him to not be with me, as it is for me. I just hope he knows how much he is loved and missed … and appreciated.


I am such a softie, very sentimental … so much it is tormenting to me how sentimental I am. I’ve always been that way, but when it comes to someone who reciprocates those emotions, I’m even worse, lol. I care so very much about people and with these dang hormones out of whack, I’m a big ole cry baby. It’s to my disadvantage tho because some people don’t appreciate caring people. That’s a whole nother blog - and not one for today!


I hope this video loads correctly and if it does, I hope you enjoy it. My precious little man. I mostly got video of his foot, since I don’t really like the way they have his face covered and all that.


Until next time …..

Positives!

My body must be telling me something, as the nurse put it. I went to bed last night at midnight after my 12AM pumping and set my alarm to wake me up at 3 for another pumping. I never heard my alarm and woke up at ten til 9. Wow! I could not believe it. I was upset with myself for not waking up but I guess my body needed rest. I feel good today except the pumping makes me really sleepy. I guess it takes a lot out of me.

I made it to the hospital about 10AM. The Dr. was just looking at the baby’s chart and his results from what they did yesterday. He told me he would be with me in a little while. I sat by Kadin’s bedside and talked to him, prayed for him, touched and loved on him. His monitor went off about 3 times and the nurse said he was excited that I was there. That made me cry. I love to have a response out of my baby in knowing that I am there for him. He calmed down when I talked to him. I told him everyone loves him and is praying for him. I put my little finger in his and he grasps me. Overwhelming feeling ….

So after Dr. Porter finished his assessment of all the records, he came over to Kadin’s beside to talk to me. The first words out of his mouth were this:

“What we are looking at with your baby is a whole lot of positives!”

Wait … did I just hear you correctly? This is coming from a Dr. who only speaks factually … He doesn’t want to get hopes up or down for family’s, but wants us to remain positive thru it all. So my response was “WONDERFUL NEWS!” I am not surprised tho simply because of who God is. God hears our prayers and there are a lot of people praying for our baby. I know for myself when I see him, I pray for him and speak life and healing over his body. I appropriate the blood of Jesus around him and pray that he is whole. I pray that God continue growing and forming everything just to his perfection. I know God won’t let any of us down on this. I feel it in my bones.

Then Dr. Porter began telling me all of the following:

Kadin’s second head scan came back normal. This was just a routine follow up from the first one a few days ago. No brain bleeds. Excellent news.

The echocardiogram that was done yesterday indicates that the vessel we are concerned about appears to be very very small and closing. In babies who are born at term, this vessel usually closes within about 3 days. Kadin’s is very very small so the Dr. is hopeful that it is in the process of closing. If it remains open, it can cause a lot of issues for the baby. One of those is that it backs blood into the lungs. That is what triggered this test … there appeared to be fluid on his lungs. The xrays today show less fluid so we are hopeful. Very good sign!

Kadin will be put back under the light for jaundice. Not sure what he said about all that, but this is absolutely normal for our baby and no worries.

Feedings are being increased from 1.5cc to 3cc.

Dr. Porter said everything is looking very well for our baby. I have said it before, I am believing his only drawback is that he came too early. Everything else will turn out perfectly for him. We just have to wait and let him grow. I could not see myself or my family making it out of this, but I see it now ……

Internet

Geesh ... I have wireless internet in my room but it only gets like 1.0 mbps and that really STINKS! So, here I am, sitting out in the lobby by the elevator and picking up 48 mbps. My room is just a few feet down the hallway, so I figured I would write my blogs in the room in a word processor program and then come out here and post them! I was told by another resident that she complained about not being able to get the internet in her room and the President of the Board was supposed to be doing something to fix that. Guess we'll see .... I can get it hit and miss in my room, some times of the day are better than others, but it is frustrating as all get out. Anyway ... that's sometimes why I don't get an update on here as quickly as I would like and then why you get 3 at once !!! lol

I am going to go see Kadin in just a little bit. I will have an update after that I'm sure. I hate not being able to be with him all the time. I can't just sit in his room. It seems like there are rarely any parents over there when I go. It's raining here too, so that's a nice change of pace. I love the rain. REALLY LOVE THE RAIN .........

Your Stories

I have noticed that some of you have had your share of issues with preemies, or with your babies being in NICU. I am not sure how it is that I have never known this or realized it (maybe a couple of you I knew about, but for the most part, I was clueless!) …

It helps me to read about your successes and your ups and downs. It helps me to know that I am not alone in this, that even some of you have been thru a portion of what I am going thru. I hate that we have had to experience it, but I would not change a thing in this world about what all of this has taught me in such a short time.

I am interested in “hearing” your stories. If you can bare to tell them, which I am sure you can, please respond to this blog and tell me your story. I want to know when your babies were born, the ups and downs, the uncertain times, the strengthening times, the smiles, the tears … I want to know it all! I need encouragement here, and I no doubt have had that from all of you precious family and friends … but I am interested, and I know you can provide me with some information on how you handled things, how you may have had no hope and then you found a silver lining, etc …

So please … won’t you tell me?!

Benefit Fund Established

I learned today that there is now an account set up at our bank to help defray travel and any other unexpected expenses. I am so grateful for this, I just can’t say it enough. So for those of you have asked me, here is the information for the account:

Danny and Leslie Kirkpatrick Benefit Fund
Big Lake Bank
P.O. Box 10
Big Lake, TX 76932

I have the account number but don’t think it is necessary. I was told any donations just need to have it notated that it’s for the benefit fund and the tellers will know which account it is.
I am waiting on an update for the bake sale. I know it is November 14th, but I don’t know what time or the location. Joe has helped set that one up and been involved in it in getting me information for it so I am waiting for him to get back with me with that information. When I have it, I will let you all know.

Thank you so much everyone …. Almost another day down in this new stage of life.

My visit today....

I slept well last night considering I hate not being with my family. Of course, waking up every 3 hours is a change for me, but now I am conditioned for it. I actually look forward to it knowing it is for the goodness of our son that I do it.

I went to the NICU this morning. You have to tell them at the front who you are and what baby you are going to see. They then call back to your unit and ask if it's ok to come back. They told me "Sure, go ahead!" ... So I scrubbed in and headed back to Kadin's unit. When I got there, there was a tech at hit bedside doing a sonogram on him. The nurse was surprised to see me and said they were supposed to ask me to wait. Woopsie, too late. I offered to go back but she said it was no problem. Anyway ... the sonogram was of his heart. The Dr. said on his chest x-ray there was some indication of fluid on the lungs, which can come from several different things taking place, but one of the most common is that there is an opening in the lines coming from the heart that should be closed. The Dr. said the Tech was not real happy with what he saw on the sonogram, but that they would leave that to the cardiologist to read and decide. If there is an opening, it will need to be closed. Their first option for closing it is to administer medication to shrink the opening and close it. Sometimes that is effective, sometimes it re-opens. Ultimately, if the opening does not shut and stay shut, we are looking at surgery. I was assured we are a long ways from that.

Kadin was receiving more blood this morning. I think this is the 3rd time he has gotten blood. It takes hours to give it to him and sometimes he is a little antsy when they start messing with him so much so the nurse sedated him during all of this and when I left he was resting fairly well. I did not touch him this morning, just wanted him to rest.

Dr. Porter also said that Kadin will get another head scan at some point today. There was nothing that triggered it, just routine to follow up from the first one. He is still tolerating his milk well and I am glad about that. I can actually tell he has grown a little bit since he was born. That is always encouraging to see.

My first night here alone was a little difficult. I made it through, thankfully. I learned from my husband today of all the wonderful things that are taking place back home on Kadin's behalf. I am absolutely blown away by the generosity and care that our community has shown for us. There is an account set up at our bank now, but I don't have the account number or the information. I will post that when it is available. I know several of you have asked me for that information but I did not have anything until today. It will be sometime later this afternoon before I get all the details.

I am just so grateful for every minute that I am alive. My heart has been reformed in so many ways thru all of this. I have forever been changed and I could not be more thankful for it all.

Please continue your prayers for our family. I appreciate the intercessory prayers more than you will ever know ....

Love,Leslie

Alone

It sucks. Plain and simple. Thank GOD it's only 4 more days until I see my family again. I can't wait. They are such a vital part to my surviving this. More importantly than me making it thru, I worry about them. I have tried to be encouraging and not cry much around them but when my little boy looks up to me with tears in his eyes and says "Mommy I don't wanna leave you!" I can't help but break down. My babygirl grabs onto me and won't let go ... yeah, I tend to get a little more than weapy eyed. I know it's going to be ok, but my children are my world and I want them to be ok.

Kadin is still doing well today. They made some adjustments on his ventilator this weekend but when his doctor came in this morning he did not seem to like the changes and was getting clarification on what the changes meant and all that. He was going to update me this afternoon when I went to see the baby but it seemed like they had a pressing issue with another baby and he was busy. I will get the update in the morning since he will be there. No biggie really since Kadin is doing so well. If anything changes of significance, they will call me anyway.

I never thought I would be so glad to report any news about poopie diapers! But Kadin had his frst really big poopie diaper today about 2:30!! She said he filled his diaper, which really isn't that much considering the size of his diapers, but still, for him, it was a LOT and I was so thrilled!

It is so quiet in my room. What I wouldn't give for some noise from my children. Their presence is very much needed right now. They have only been gone for about half an hour but it seems like forever.

I am battling a headache today. Not sure what it's origin is, but I am thinking it is one of my teeth. Great. That's all I need. My wisdom tooth doesn't seem to be doing very well. Nothing is touching the headache.

I suppose I am going to finish straightening my room now and get everything organized again. We kinda just let the kids take over the room this weekend, trying to make it theirs .... feeling comfortable in the place. My mom bought me some pineapple juice, which I absolutely LOVE, and I need to take that to my fridge. Not even supposed to have it in my room. Woops, rule breaker!!! After I am finished in here I will probably go dowwnstairs to eat and then wait to go see my son again .....

For my family ... I miss you more than words can say. I know we will be together again shortly and until then we will do everything we can to "see" each other, talk, text, whatever. I pray that this time goes swiftly so that we will all be home with Kadin and watching our lives continue to unfold. I LOVE YOU ALL!

A Faith Renewed

My faith has always been strong. There have been times in my life, particularly in the past few years, that have left me wondering if God still remembered me. He comforted my tears and fears many times, but I still couldn't help question his presence in my life. I have never been more certain that God still performs miracles than I am now. It is nothing less than a miracle that our baby boy is doing as well as he is doing. I pray that it never ends. I pray that he is WHOLE in the name of Jesus and his only drawback is that he came too early. I don't really have a lot to say regarding his condition at this point because, miraculously, there have been no changes. I am NOT waiting for the other shoe to drop. I am believing this is the handprint of our Lord an Savior. I am believing that things are going to just continue to look up from here.

I wanted to share a little story ... it's not magical, it's not fancy, it's not one to keep you on the edge of your seat, but it is real and it is true, and it happened to me just today. I have not shared this with anyone at this point. I'm not sure why I haven't, I just haven't. But as I was getting ready for my day, it came time to shower. I usually pray when I take a shower or bathe, so today was no different. I got the water running, began preparing in my mind what it was I wanted to tell God today ... thanking him was top on the list. I began pouring my heart out to him in a little more than a whisper. Tears poured from my eyes as I tried to form the words thru trembling lips. I am so grateful for how my son is progressing. I know God knows my heart, but I still feel I have to tell him. I remember just whispering the words "Help me Lord" .... My intention was to ask God to continue to give me the strength to get thru whatever comes our way with Kadin. All I did was whisper "Help me Lord" about twice and immediately I knew something was different. I felt a presence blanket me. I actually thought someone had moved the shower curtain and I opened my eyes to find nothing different ... just me standing in the pouring hot water. It felt like a small pressure in the air, like someone had walked up beside me, but I felt was more like several people walking up to me at once ... I can't explain it but I knew when I realized no one had moved the shower curtain that Jesus had visited me right there. He had met me where I asked him to. He comforted me. I know in my heart that no matter what we endure or face with Kadin, the strength will be provided. The peace will reign. I know in my heart that our wait here is nothing but a growing period for our son until it is safe enough for him to go home. If I have ever been sure about anything, it is this ..... God still can.

We did not visit him but once today. My mom drove up this afternoon and made it here in town about 5:15. Since the neonatal until closes from 6-8 AM and PM, I did not want to be rushed in visiting the baby. We met my mom and my Aunt Rose at a Mexican Inn for dinner and visited for a little bit before we went ahead and went to the hospital. We had called a few times today and was told there had been no changes, he was doing just fine. I am amazed every time I hear those words.

So when we made it to the hospital, it was time to scrub in and go visit. They had him laying on his right side. He is just so precious. I can tell he has grown. Even Robbi said he looked a lot different than when she first saw him. I am so eager and ready to hold my baby. I have never gotten to hold him before, of course. As he grows, so does my love for him and my desire to finally get him in my arms. At first I was timid and scared to even touch him, but now, I can't wait to.

The nurse on shift said he had a wonderful day. He is tolerating his milk very well and actually really liking it. I asked if he had been weighed since they told us he weighed 1 lb. 4 oz. - So the nurse looked it up for me since he is weighed at midnight every night. She said last night when he was weighed, he was 1 lb. and 7 oz. - MIRACLE! He has already exceeded his birth weight and he is only 5 days old. They were impressed by this and said it was a wonderful thing for him to be doing so well. Everyone has said to expect ups and downs ... I have had enough of the ups and downs already. His first couple of days were not so good ... they were not "bad" but they were nothing like what we are experiencing for the past 3 days now. the nurse also gave me a formula to figure his weight when they just tell me what he weighs in grams. I have been filled with terminology and equations that I never even knew existed. I feel a little more brilliant, lol.

I suppose this blog wouldn't be complete with letting you know how the visit with my children has gone. It was rough at first. No, wait ... it was very hard at first. They are still not understanding the situation and I doubt they ever do. Robbi has had to deal with a few different issues and they are just things that will take time to iron out. There is not a quick fix for anything that we are going thru right now. Dakota was tearful today not undertanding a couple of things either and it broke my heart to see him cry. I cried a few times today myself just from the reality of how difficult all of this is for my children. It wasn't supposed to be this way, but I keep reassuring them that it will only be 4 days at a time in between us seeing each other every week. Dakota's daddy is going to set up his web cam and I am going to see about getting one so that Dakota and I can "see" each other during the week .... I can't wait for that experience !!!!!!

We took the kids all over this RMH ... they played pool, went outside, rode the eleveator, climbed the stairs, etc .... we bought a Monopoly game and Dakota won. He always wins! Tomorrow we will have breakfast with my mom and then they will go back with her for the week. It is going to be a highly emotional time for me when they are all gone and I am here alone. I will have a lot of "me" time, but without quoting Gary Chapman to my sister, I know that out of the darkest times in my life comes the biggest blessings ... I am holding onto that promise. One day I will look back at this and realize just how miraculous this time has been. Not only is Kadin growing and doing well, I am growing. I am stronger and better for it ....

I will absolutely never take for granted the simple things again ......

Goodnight ......

My TEMPORARY Address

I posted this already but some are still asking for me to post it again so here is my address where I can be reached via snail mail. You can always email me at flossykirk@gmail.com or redlady88@hotmail.com. It would be great to hear from you!

Ronald McDonald House of Fort Worth

(My Name) - Room 201

1004 7th Avenue

Fort Worth, TX 76104

Don't Let It End

I pray the experiences we have had in the past few days don't change much. I finally have some much needed relief and peace of mind from Kadin doing so well. There have been no changes in the past 2-3 days and wow, what a fantastic feeling. He is feeding and feeding well. They say he is rreeeeeeeeeeeeeeeeeeeeaaally liking momma's milk. It is such an urgency for me to pump because I know it is going for the goodness of my little boy.

My children are with me and I could not be happier. Ok, well, maybe I could. I could be happier if we were all home, but yeah, you get the picture.

I can't believe I don't really have much to say, but I am taking it and running with it. We will see Kadin later today. Right now I am going downstairs to have some breakfast with the kids and let them have the run of me! lol

More later, when I have something to say ...

Oh wait ... Let me just say that I am blessed beyond measure by all the people that I have met thru this experience. Some of you, the friends that I already have, have sent me new friends who have gone thru the same things we are experiencing. It is very helpful to have that support system of people who have been there, who have had great successes on their own journeys, and who can look at me and say "Hang on!" It is all an added bonus to the much needed support that we are already receiving from our other friends and family. I don't know what I would do without all of you ... and I mean each and every one of you that have taken some role in support for me and my family, no matter how big or small ... it will never be forgotten.

Leslie and Family

Elation

Only have a minute ... so much to do. Hard to believe, I know.
We visited Kadin again this morning. Partner Dr. Grubbs was there to give us an update. I am so elated right now I never want it to end...
The term he used to describe Kadin's progress is "remarkably well" .... He said he will have ups and downs, but he has done so well for the past 2 days.
Feeding is beginning today. All this pumping has been waiting for this moment. He will get about 2 teaspoons today thru his feeding tube and they will see how he tolerates it and increase or decrease as needed. Very exciting news !!! Even though that is exciting, believe it or not, babies are not "hungry" at this point. He does need it for nutrition and growth.
I just don't really have anything else to update on. The Dr. seemed so positive this morning and maybe even a little surprised at how well Kadin has stabilized.
We took more pictures. They had his bed changed around and it looks so cute. Will do all that later ...
For now, I have to get things in order to go get my children tonight!

Last Night's Visit

It seems I have been able to visit Kadin about 3 times a day. I get there in the morning when the Dr. is there which is always good because updates are available at that time. Usually mid afternoon I get in another visit, and then a late evening visit. Since the unit closes between the hours of 6-8 both AM and PM, I don't worry about those times.

I wrote last night about our visit, but myspace at the post. Either that, or my internet here is just not very reliable. I am guessing it's probably more the internet than anything, but I had a good long detailed account of last night's visit and it's gone. I will attempt to recall it all. I've slept since then!

When we got to the visit, the first thing we noticed was the blanket that was made for Kadin was draped over his bed. This is a common sight for the unit. In fact, we had wondered if we needed to bring him a blanket, but they told us that the volunteers made them and he would be getting one soon. So YAY, he has one and it is so cute.

The nurse we had last night is a very interactive nurse and I think I will be partial to her. She actually encouraged us touching him. The "min stim" period (minimal stimulation) is over and she said touching now more often is a good thing. She let down the top on his Cadillac and there he was, just laying there for us to hold. Rubbing is not encouraged because of it being somewhat painful for him, but the firm holding is comforting since it helps make him feel swaddled.

As I had mentioned the other day, his left eye was opening. Last night, his right eye was trying to open also and it was so precious to see him try to raise his eyebrows to open them to see. Of course, his field of vision is uncertain at this early age, but she said he can see movement. He did seem to try to open his eyes when I would talk to him and touch him. I like to see that.

I understand it to be that he had a very good day. After the news of his head sonogram being "negative" I have been on a high. The nurse said last night that if they have a negative result from the head scan, usually they don't ever develop any brain bleeds and are considered out of the woods with that happening. YAY !!!!! I know God has his hand on this little man. I don't know why he had to come so early but I know there are great and mighty things in store for him.

As I said earlier, the nurse we had for the past two evenings is a very interactive nurse. She had us taking pictures of him in different poses. She put a measuring tape next to him and we took a picture of that. She put Danny's wedding ring around Kadin's arm and took a picture of that. She took off his hat so we could see his full head and we discovered that he actually has some hair, which we were told in the beginning he did not have ... ok. The hair is dark and his eyelashes are as blonde as they can be. He is just perfect.

When we told the nurse of our misfortune with the breastpump issue, she went and got us the parts that we needed. She said if insurance won't pay for them, it will be billed to us but at least we did not have to shell out the $90 for it right now. What a blessing! So I was able to pump last night and all thru the night just fine! Our water issue seems to have cleared up, which sets my mind at ease a little more.

I made arrangements for my children to be here this weekend. Dakota called me last night and was crying. It broke my heart. I did not have anything definite to tell him as far as when we would see each other because my nephew went in the hospital and my mom said she thought maybe her plans to come were on hold. However, God made a way and I will be seeing my children tonight. I am so very excited about it. I wish I could see JT too and I know I will soon. I talked to Dakota's daddy for a little bit about him and he is doing all he can to help Dakota thru this is. I feel being with his daddy is the best place for him to be if he can be, especially with having separation anxiety. I know he loves to be with my mom and sister and my nephew, but I reflect back to when I was younger and stayed with my grandparents, I was heartbroken from missing my mom and dad. I loved being with my grandparents, but I remember the hurt of not being with my family, and that was only for a weekly summer visit!!! I hate to have my children separated during these times, but that is a whole nother blog. They will be here together this weekend and I just can not wait !!!

I guess it's time to go for our morning visit. I pray all went well thru the night. I did not call the NICU during the night. I was so exhausted. It was all I could do to get up and pump for the baby. I managed, but my head hit my chest a few times.

More later .....

Praise God for ONE MORE MILESTONE!

Quickly, I wanted to update again. I know I can tend to run on and on and on and on when I update, but we are just so very excited about having just returned from our visit with the baby ....

He looked so wonderful when we looked at him. They had just given him blood so his color was wonderful. They had the light off, his sunglasses were still removed, so he looked more like our little baby boy rather than a motorcycle rider, lol. Nothing wrong with motorcycle riders, butI just wanna see my baby's face. He was resting and looked very peaceful.

While we were standing there, the Dr. on call for the evening came over and asked how we were and said that Kadin was doing very well right now. He also said that the brain scan to check for brain bleeds came back EXCELLENT and there was nothing wrong in that area. PRAISE THE LIVING GOD !!!!!! He said Kadin is just exactly where he should be for his gestational age and he seems to be doing very well. The new ventilator is like a Cadillac for him and he is responding very positively to everything.

He was so cute to watch. You know babies learn how to "suck" in the womb, you can actually see at times them sucking their thumbs while in utero, or even just making the sucking motions. My batteries died, but I attempted to get video of Kadin practicing his sucking motions. It was adorable!!! I can't wait to hold him soon. He seems to be doing so well, I don't want it to end.

We have had a little setback with the nursing/pumping issue. We came back to the room and I was going to clean up all the equipment for the breast pump. The water to the RMH had been turned off earlier today for quite some time for some repairs to be done. Before we left for our visit with Kadin, we flushed the lines, let the air out and any debris that might have been in the pipes. Unfortunately, not everything was cleared out and when I went to wash the equipment, there was black dots (extremely small!) all over the bottles and pumping equipment. I could not imagine what it was, but it wasn't coming off. To make a long story short, Danny has gone over to the hospital to get me some new supplies. I can't pump without clean and sterile equipment. It's just too risky for any baby, but especially a baby as young as ours! I have let the water run ever since he left and he still has not returned and it's been a little while. (Update: I just heard from him and he said I will not be able to double pump, just pump one side at a time or buy more pieces ... the kit is $90. I am wondering if RMH will replace my stuff since it was ruined by their repairs?)

Well, ok, I'm going to try to get some other things done around here and figure out what to eat. This place is amazing, there is tons of food in the kitchen to eat and every night a different type of organization or business or even club at school comes to cook us dinner. The first night we were here it was dinner by the National Honor Society students.

Alright ... I'm out of here for now. More later ...

Another Fruitful Day

Today has been another good day. When I pumped this morning, I called the NICU and got an update. They told me he was "behaving", lol .... that really there was nothing to update at that time, which was really good news. Anytime there is not really anything to update, that is very good news to us! They said his organs are working well since he finally decided to give them "a little poopie" as she said! He had gotten his antibiotics already, his blood gas was good, and he was resting.
We did get to visit with the Dr. when we went to the unit at about 10AM. He said that he was going to be giving him more blood. They are having to sample his blood and Kadin is small enough that he is not able to reproduce his blood quick enough so his red blood cell count drops. We noticed they had him on a different ventilator. It is a more sophisticated device where they are able to tune it in better and are getting a better response out of Kadin on this machine. His left eye has opened and it is such a precious sight to see him trying to open it even further. Of course, his eyes are not fully developed enough to be open and alert and looking around but he will get there. I was able to take his temperature for the first time this morning. I was terrified .... but I did it. And he did not like it at all. He seemed to calm down when I started talking to him and telling him it would be alright. He was scheduled to have a brain scan today (I think I wrote about that already) and we should have the results of that tomorrow sometime. I will definitely try to get those results on here asap.
We will be going back over in just a little bit. I pray everything has gone well since we visited this morning. I am expecting good news. He is so strong and is moving more and more every day. I am even stronger today, I have teared up a few times, but not all out crying like I was doing. I guess they all knew what they were talking about in saying the first 3 days are the most difficult ... until you finally get a feel for how things are going to go, the terminology that is thrown at you, the ups and downs of the good and bad days, facing the entire situations desperation, etc. It also helps that Danny and I have met some of the other parents of the babies in NICU. Their stories are similar to ours. Their pain is the same as ours. Some of them are far from home, just as we are, so knowing we are not alone is a great comfort.
We have been notified that there are several benefits in the works and I can't even express what this does for my heart. Just to know that others care enough to try to help is such a blessing. People that you never really think will pull thru for you will surprise you. It is amazing and we are so grateful for everything that everyone has done and is continuing to do. I will get all the information posted here if anyone gets it to me. I know there is a bake sale taking place on Friday November 14th, but I don't know where. I know there is an account being opened but I don't know when or anything else about it. I was told today there are a couple of other things in the works and a benefit being organzied in Rankin, even .... WOW! This always happened to and for other people. I know I could never repay what my heart feels about all this ......
I added some pictures to Kadin's album. I hope you all enjoy them. I burst with pride when I see them. I am so proud of the gift God has given to my family ......
Neverending thanks for your thoughts and prayers ... I can't say that enough. I know it is what is getting us thru this.

Love Love Love,
Leslie and Family

PS.... I have an address here at the RMH is anyone wants to write. I enjoy getting mail (cards, letters, etc), so write me !!!

Ronald McDonald House of Fort Worth
(My Name) - Room 201
1004 7th Avenue
Fort Worth, TX 76104

A Victorious Day

I am praising God that we had a victorious day. I have learned quickly in the first 3 days not to get excited about anything, and not to get upset about anything, just take it as it comes, deal with it, keep a positive attitude, and wait for the next milestone.
I just about finished getting settled into the RMH. It is quite an adjustment to "move" so suddenly. It has helped me a great deal to have Danny here with me for the comfort and familiarity. He helped me accomplish a lot today. I don't think I could have done it without him. Maybe a better description would be that I don't want to. I know you all understand how unsettling it is for you to go thru such sudden change and then have to do it alone. I have never been one who adapts to change very well, so having it slung in my lap has had me doing loops.
I am managing to not cry as much now. Either that, or I have just had a spectuacular day. I pray for the day that I don't shed a tear. It is so difficult though. I miss my whole world. That world consists of my precious children and my home. I know I can't leave here while part of my heart is lying in Harris Methodist NICU. It just isn't going to happen. I know also that part of the crying has to do with hormones, but I can't help but think if I had not just given birth to a baby, I would still be feeling the same way about having to be away from my children that I need so much, and who also need me greatly.
I set my alarm last night to get up every 3 hours and pump milk. It is up to me to provide that nutrition for our baby boy, so I was determined to get up and pump. I have a really nice double breast pump that came from the breastfeeding resource center of the hospital. I have never seen one like this before, but it is really nice. Since Kadin is in NICU, I got a month's rental for free. I got up 3 times in the night and pumped and got absolutely nothing. I did the same routine thru out the day and finally ... FINALLY! at 5PM's pump session I got enough to cover the bottom of a plastic sterile bottle. YAY !!!!! They told me in the NICU they did not care if I could only provide droplets at this point, any was better than nothing, and with him being so small, drops is all he will be able to handle. I was so excited I had to take pictures of the milk. Big dork, but hey ... like I said earlier, another milestone! I also managed to get more milk pumped later in the evening, so my hopes are high for what I will get in the night.
We visited Kadin a couple of times today and called a few times for updates. When we visited this morning, the Dr. said Kadin had some changes in the night around 2:30AM, and not for the better. This is what his list of changes looked like:
♥ Kadin's metabolic acid production is elevated. This could be caused by several things, one of them being that he is urinating so much. This isn't necessarily a bad thing that he urinates so much because that shows that his kidneys are functioning very well. However, they have to eliminate the cause of the elevation.
♥ A head sonogram is scheduled or tomorrow (11-06-08) to check for brain bleeds and see if that is the cause of the elevation.
♥ Kadin had a slight fever in the night but quickly snapped out of that issue.
♥ Upon our visitation this morning, the nurse was sedating Kadin somewhat because he had become very irritated and she wanted him to calm down and rest. It worked rather quickly.
♥ Kadin is riding the ventilator. They had to move him back up from a 15 to a 44 but he is not receiving any extra oxygen. He is breathing the same air that we breathe and doing very well with it. He has figured out with the ventilator turned up, he doesn't have to work hard at it, but they are moving him back down slowly.
♥ His white blood cell count is still up but falling. Good indication that the infection is being fought well with the antibiotics. His immature white blood cell count is up, and the Dr. doesn't like to see this. Red blood cell count is wonderful after receiving blood yesterday.
♥ Kadin continues to receive his "steak and taters" ... vitamins, fats, proteins, all that good stuff necessary for growing plump!
There were no changes to report for the rest of the day. Usually, SOMETHING changes, but nothing today. Very encouraging for us. When we visited tonight he became very excited and started moving all around. He recognized our voices and was excited that we were there. The nurse said he would get excited at first but it would have a soothing effect on him. I didn't realize just how much, but he had his little excitement period then he relaxed and went to sleep. It's awesome to see ... that such a small being can react the way he does. The nurse said he does not act the same when he is with all the nurses and the minute we walk in he is all excited. I love it ... I feel the bond forming and I could not be happier.
Did I mention that I am totally in love with this baby's feet? They are so precious. They are PERFECT. I mean, they are so small yet so wonderfully made. I have a lot of pictures to add to his album, so I will be doing that probably tomorrow. We have so many pictures of him.
The hospital volunteers make blankets to put over the baby's incubators and tonight we got to see Kadin's. It is so precious. It has tons of bold colors in it, mostly red, blue, and yellow, and I love it. I have a picture of it too and will post it also tomorrow probably. They can't put it on his bed until his "light" gets turned off. He isn't jaundiced or anything, I just can't remember why he has the light.
Also, I have started a blog at blogspot.com .... I am going to make these updates public so that others who do not have a myspace can read them and get updates. If you know anyone who is interested in reading them, the url is:
http://kadinsjourney.blogspot.com/
I will have pictures on there also, just not sure when I will get all that done. Probably when I am totally alone. I don't want to "double-do" myself but there are a lot of ppl that don't have a myspace that can't read my updates that are sending me emails and texts wanting to know how things are. I hope this will be a good method of communication and maybe help someone else along the way.
I am seeing things much brighter today. My faith is growing every day. I have much hope for our child and his progress. I know just as he has good days and bad days, so will I, but I pray that my faith will keep me more on the up side than the down side, even in the storm.
I have not really answered very many messages and have certainly not posted any comments to others lately, but I hope you all understand. I am receiving ssssoooooooo many messages and it is hard for me to answer them all. I do want you all to know that I am appreciative of all the well wishes and prayers that are on our behalf. It means a lot to me and my family. I know some of you have written saying you want to come visit. I am really uncertain about how each of my days are going to be at this point. I am trying to get myself into a good routine for eating, sleeping, pumping, visiting Kadin, laundry, bills, down time, etc .... It may be another week or so before I feel settled enough to sit and visit with anyone. I am fairly certain that at this point, Kadin can have no visitors other than family. I will have to ask about that.
Thank you all for everything ... I can't express to you enough how much it means to me that when tough times come around, everyone seems to pull together and get thru it. I was notified today that there is going to be a bake sale in our honor next Friday to help defray the cost of travel and any other expenses. I was also told there is an account being set up at the bank in town for donations for the same ... I was very humbled at this news and extremely grateful and appreciative. It is such a comfort to me that others are willing to help ..... It just reminds me that I am in the same position as many others were in when I donated to them ... five dollars here, ten dollars there .... brownies, cakes, cookies sold on their behalf to raise a little money. There are always big jars around town to help someone in the community and I am so glad that I gave during those times. I would be glad regardless, but it just seems to mean more to me now that I may know somewhat of what others went thru in their times of need ....
I will close this with a heavy heart for a good night hug and kiss from my children. Those are the simple things that mean so much to my world. They are what pull me thru on a daily basis, and I would give anything to hold my little Kota's hand as he falls asleep at night, to smell his sweetness after his bedtime bath, to say a prayer with him as I tuck him in bed ... to feel sissy's hair and how soft she got it drying it after her shower, to hear her sweet voice tell me "I luh you too momma!" as she takes herself to bed. I will never again take for granted any of those precious things. I will savor them every single minute that I can. The are the heart of me and I just pray they know how much they are loved and missed.

Love from deep within,
Leslie