Posted in faith, family, happiness, life changes, milestones, nicu, pictures on January 15, 2010| 1 Comment »
When we went for our check-up in December, we walked by Pod C, where Gideon was when he was the most sick. It made my heart flutter to look at him, so big, and remember him small and hooked up to the ECMO machine. Here are my boys, almost two years later.
Sometimes, I can not believe what a gift we have been given. I know that God has plans for our family and we never forget why we have each day.
Every day is a gift from God.
Posted in children, everyday, faith, family, friends, nicu on October 12, 2009| 1 Comment »
It is strange how life reminds you of your past in the least expected ways. I found out today that the daughter of a friend had her baby 14 weeks early. They are in the NICU with their little boy and he has good days and bad days. Today was a bad day for him.
A couple of days ago, another friend called me for new Mommy advice and I realized that her baby is as old as Gideon was when we finally brought him home. Some of the things she has struggled with, like that grueling 3 week growth spurt, we never struggled through. I think then we were still trying to get off the ventilator.
Every single day I am thankful for my child. There are not very many days that I forget the first 5 weeks of his life, that he . I never, ever forget he is a gift from God given to this family to care for. Even when he is whiny, clingy, and Mr. Sad-My-Teeth-Are-Bothering-Me boy who got up at 4 am this morning. 4 am!
I still love him.
We took a nap together today and that made us both a bit happier.
Posted in health, nicu, updates on December 11, 2008| 1 Comment »
Yesterday, Gideon had an appointment at the Meyer Center at Texas Children’s Hospital. They like to do a developmental check at 6 months and a year and a half after discharge to make sure that the child is progressing normally and to help them if they are not.
I was not too concerned about us learning bad news; Gideon and I recently went to a new Mom play date. There were two babies just a couple days younger than Gideon and one baby a month older than him and he outperformed them all. Of course, he is currently wedged against his bedroom door trying to eat it, so I am not sure of the validity of my observations of his intelligence.
As we drove to the hospital, I thought about the other times we made the same drive: when my mom took me to the hospital the night after Gideon’s birth (I was worried I would not see him again), when Ries and I rushed home and back after those first two days with a car filled with things we would need to stay at the hospital indefinitely, and when Ries and I rushed back to the hospital after learning Gideon was indeed going to go in for surgery that day. It was harder going back than I thought. I remembered the strangest things, like the way the bathrooms smell and the hand soap they have there that Ries is in love with.
I also remembered what I learned later, that the doctors did not expect him to live past that first night. I remember praying and hoping for him and over him everyday. We even went to the 4th floor, were the NICU is located, and I felt grateful we had been in that place, where there were people who treated us and gave Gideon another chance. The irrational part of me was worried we would have to leave that place, again, without him, but rationally, I knew better. We were there for a checkup only and he is doing great.
The doctors watched him interact with us and them. They tested his balance sitting and standing, his dexterity with small objects, his problem solving, and his listening skills. They asked us questions about what he does at home. With joyful smiles, they told us he is advanced in all areas (verbal, cognitive, interactive, hand eye-coordination, etc.), completing advanced 8 months tasks. (Gideon is not yet 7.5 months) They gave us some tips for playing with him, helping him to learn labels for things.
It was nice to have a doctor say what we had suspected: Our son is progressing well, better than normal even. It amazes me how I feel like I can never be more grateful for the chance to be the mother of this baby and then I suddenly am. What a blessing.
Posted in breastfeeding, nicu on July 28, 2008| 5 Comments »
[written a couple weeks ago]
I have wanted to write this for some time. Tonight, Gideon and I have our Le Leche League meeting and I thought today would be a good time to start writing our nursing story. Plus, the wee bairn is asleep so there is no time like right now. I want to write about our breastfeeding experience and learning process for a few reasons.
When Gideon was born, I held him for a few minutes and then he was removed from my arms so our midwife could try to clear his lungs and give him oxygen. When this did not work, he was rushed to the hospital. Gideon spent the first 5 weeks of his life in the NICU. The first 18 days he was on a ventilator and he had a nasal cannula feeding tube for the entire first month he was alive. That means that my precious boy did not have good associations with things being in his mouth and throat. His only experiences with oral stimulation were very painful, at worst, and very uncomfortable at best.
While Gideon was unable to breastfeed, I had to pump, first to bring my milk in and then to keep my supply up. I was very lucky that Gideon was at Texas Children’s Hospital because they have a Milk Bank there with consultants and pump rooms. Starting the day after his birth, I pumped every 2-3 hours during the day and every 4 hours or so at night. I never skipped, except when I was sick, I once went 9 hours without pumping. Even at the beginning, when I would get nothing in my bottles, I pumped. Because I could not hold Gideon, it took a long time for my milk to come in; it was almost 2 weeks before I was getting consistent milk. I took a picture of Gideon with me when I pumped and I would talk to it, pray over it, and cry over it. I think the picture helped a lot. I also drank about 2-4 cups of Mother’s Milk Tea everyday as I was able.
Finally, came the day when I could try feeding my boy. He was still getting feeds in a nasal cannula (Gideon received the milk I had been working so hard to pump in his tube), so there was no pressure to feed him right away, but he was also not hungry either. It was frustrating. The first four days, I simply held him while his tube feed was going in, on my lap, rubbing my nipple on his lips, and expressing milk into his mouth. This taught him to associate being full with my smell, a nipple being in his mouth, and the taste of milk. After a few days of this, we tried actual sucking. This was much harder.
Sucking is very hard work for infants and Gideon, with a sore mouth and throat from all the tubes, was not inclined to try very hard. He cried and fought at my breast the first week every time I would feed him. He had a very tough time keeping my nipple in his mouth long enough to get anything and he wanted milk from the second his mouth hovered around the correct area. To help fix this, I would use a pump to pull out and harden the nipple then, to help him draw in the nipple and keep it there, I used a nipple shield. While he was sucking, I used a needle nosed syringe, filled with milk I had already expressed, to squeeze milk very slowly into the corner of his mouth every time he sucked. This gave Gideon immediate satisfaction of tasting milk while working up his sucking stamina.
With all these efforts, Gideon would still only suck for three minutes at a time. It was frustrating, but I was determined.
We did the syringe and nipple shield thing for about two days, then we dropped the syringe. I continued to use the nipple shield for the first week. One night, the night nurse we had for the evening suggested I try it without the shield. I did and, to my surprise, Gideon was able to suck without it. It was wonderful. I continued using the breast pump for a few more days.
After getting Gideon to latch and suck, our next issue was that the hospital wanted me to feed him on a 3 hour schedule that corresponded with his tube feedings. I was asked to feed him before his tube feedings, but he was never really hungry and I often had to wake him up to feed him. There is no way to force feed a sleeping baby that still does not understand why he needs to spend all that energy sucking anyway. I stayed at the hospital and was there for every feeding, except I would take a break during the 3am feeding to get a 5 hour stretch of sleep. We persevered. I cried a lot, but eventually, he was off the nasal tube. After that, it was all me, all the time. Somewhere in all this, I also got mastitus and ran a nasty fever for a day and a half. It was extremely painful, but a small hill in an battle full of mountains.
Ries and I were adamant, no bottles, so after he was off the feeding tube I had to stay at the hospital, by Gideon’s bed 24/7. Newborns who breastfeed eat often and Gideon was no exception. For over a week, I lived by his bed, milk at the ready. I continued to pump when feeding did not go well, to release the milk of the side Gideon had not gotten to, and to keep my supply up for when he actually did start eating normally.
In order for us to go home from the hospital, Gideon had to gain weight. Eventually, he showed enough improvement that we were able to come home. He is now a healthy, getting chubbier, breastfed baby who gets it only from me.
It was a hard road. I did a lot of crying and so did Gideon. I fought to keep formula and bottles from him. I never once, in my tired mind, wanted to give in. I was determined, after all that had gone wrong, that this one thing would be right. I think the only thing that got us through was prayer and perseverance. I could not have done it without a lot of professional help from some very good lactation consultants, my husband, and my family.
Breastfeeding is a lifestyle, a gift, and a trial in patience. It still is after almost 3 months. Gideon and I are still teaching each other new things about this nursing relationship. I think we will continue to do so until he is weaned, many, many months from now. I feel like a cow and can not be away from my nursling for more than a 2 hour stretch, but I would not live any other way.
Posted in breastfeeding, geeks, nicu, updates on June 4, 2008| 2 Comments »
The good news is that Gideon is doing great and eating like he is in a breast milk chugging contest. The bad news is that he lost 40 grams yesterday (about an once). If they let us go home this week, that puts us on Friday. I am still hopeful. It is pretty common for babies to lose weight the first day off their feeding tube.
The baby in question is now sleeping. I escaped as soon as he was out for breakfast. I shall wait until he is up and fed again before taking a shower. By the time he and I are ready for that, his Granparents Smith should be here to amuse him while mom is away. The best thing about being rid of the feeding tube is that Gideon is no longer beholden to the eating schedule of the hospital. I can feed him when he is hungry, which is about every 2 hours. I must brag and say that at night, he sleeps a solid 4 hours in two stretches after eating a very large meal. Hooray! For me, that means a couple chunks of 3 hour sleep. I feel wonderful today, even though I have not had a shower as of yet. If sleeping was a super power, Gideon would possess it. He also sleeps through noise, diaper changes, and random acts of Momma kissing him all over his face. He gets this amazing ability from his father.
I can not believe we have been here over a month already. I keep thinking that it is still May and that Lost is still on. Technically for me, Lost is not over since the season finale is hanging out on my DVR. Thank God for technology. Somewhere in my mind I think life has not progressed outside of the floor of this hospital. I had planned on doing things this month, you know, after enjoying being a mom and not doing anything for the month of May. I was going to be writing a book chapter. We shall see about that. (Karen and Anne, not our book. Please, no hyperventilating).
We need prayers for weight gain over the next couple days. It is funny the things I have begged for from the Lord over the past month. I never thought weight gain would be on the list.
I appreciate all the breastfeeding advice and encouragement. There was a lot of tears and frustrations this past week, but I think we may finally have the hang of things. Now we just need to get home and get our own schedule established. And by that I mean, laying on the couch watching Battlestar Galactica, Robin Hood (both on my DVR waiting for me), Firefly, and other things to begin the geek indoctrination process.
Gideon is still sleeping and we have another day in front of us. That alone is enough for which to be grateful.
Posted in breastfeeding, children, nicu, pictures, updates on June 3, 2008| 10 Comments »
Gideon is one month old today and he is tube free! Hooray!
This morning, his NG feeding tube was removed and he is now on Momma’s Milk from the source. I am now officially a cow 24/7 for the next year or so. At least I know what I am getting myself in to, I think.
Can you believe that cute face?
Gideon also had a follow up echo cardiogram yesterday and everything looks normal for a baby his age. This is great news since one of his problems was his pulmonary arteries not working properly.
Ries and I took car seat training today. One step on our journey homeward.
Speaking of home: As long as Gideon gains weight over the next couple of days we can go home. HOME! He has been eating like a piglet, well he grazes like a cow, so I am not worried about him gaining. We expect to be home Thursday or Friday. I am in a state of unbelief.
My last post was very down and I am sorry about that. Lack of sleep and some very frustrating days had worn me down. I just really wanted my boy to be home and better and was indulging a in a few too many worries. I spent most of yesterday praying for weight gain in my boy (so the tube would come out) and strength for my ravaged nerves.
Of course, God was always watching out for us and I was given just what I needed to get through.
We have many things for which to be thankful not the lest of which is the prospect of being home very soon.
Cow duty calls. Ries and I think maybe the code name for breast milk should be Mudder’s Milk. Oops. Now he is really crying.
Posted in breastfeeding, nicu, updates on June 1, 2008| 2 Comments »
Here is what I have been doing for about a week now:
Breastfeed Gideon. This goes great or not so great depending on many things. If I had to wake him up to feed him and maintain the schedule they like him to be on, if his diaper rash is bothering him, if he is actually hungry, in the mood, the position of Mars in relation to Venus. Because we are literally here waiting for him to gain weight, I feel very defeated if he decides a particular feeding or string of feedings will be bad.
Hold Gideon or put him to sleep while he gets his feed in his NG tube. The feeding has been reduced to 29cc which he gets on a pump over 30 minutes.
Hope Gideon is asleep so I can put him in his crib and escape for one hour. If it is during the day, I sometimes stay and hold him, leave to go to the bathroom, or go get a snack/dinner/lunch/breakfast/take a shower. Sometimes, I also have to go pump if it was a bad feeding and my breasts are killing me. I produce about 5oz every two-three hours and Gideon is not up to eating that much yet. If it is at night, I take a one hour power nap.
Repeat on a three hour loop.
Repeat every day until we leave the hospital.
It is grueling, disheartening, and defeating. I get about three hours of sleep, in one hour blocks at night, and cat naps during the day. It is worth it to be able to take my breastfed baby home, but frustrating because breastfeeding can not be measured or quantified. If they could measure how much he was getting, they would be more satisfied and we could go home faster. We tried weighting Gideon before and after feeding, but I found this to be so inaccurate, that I asked if we could discontinue it. The nurse practitioner said I could if wanted but reminded me that other than weight gain that was their only measure of food intake. I still asked that we be able to stop doing it since it mostly showed no food intake when I knew he was eating.
I have no time for writing here really or calling people. I can answer text messages easily enough. I hope we are home soon.
Posted in nicu, updates on May 29, 2008| 1 Comment »
Not to a penthouse in the sky, but to NICU Level 2, where they put babies who are not very sick and who are almost ready to go home. Woohoo!
We are waiting to see if they have a bed available and then we will move sometime today. I am going to miss having our own room and very attentive nurses, but I am excited about this step.
I have been at the hospital with Gideon since Sunday, working on breastfeeding. Yesterday, I forgot to sign up for a room for the night, so I took cat naps in Gideon’s room in between feedings. Luckily, you can get a room during the day for naps. I signed up for one so I can take a shower.
It is strange staying at the hospital. I have not left this floor for days and the only reason I have been outside is because there is a garden on this level in between two of the places I go to often, the Milk Bank and the Ronald McDonald House. I keep expecting the world to not be going on without me, but that is not how life works. No one else was in the waiting room this morning and so during one of my breaks, I watched CNN. It was nice.
Currently the man in question is sleeping soundly. I hope he wakes up for his noon feeding.
Nothing else to report.
Posted in breastfeeding, children, nicu, updates on May 29, 2008| 1 Comment »
Sorry there was no update yesterday. Gideon realized both of his parents were here and if he cried and acted like something was dreadfully wrong, one of us would hold him. Spoiled already! Without all the tubes, he has only monitors and a feeding tube in his nose, we are free to pick him up whenever we want. It is nice.
Breastfeeding is progressing. Luckily, the doctors are supportive of not mixing bottles and breast so that is one battle I do not have to face. Gideon has stopped fighting at the breast and stays latched on longer. His latch is not always great, but it is usually pretty good. He is doing more productive, stronger sucks more often and the time he nurses ranges from 10-20 minutes. Gideon is a leisurely nurser and likes to sit there as much as eat. I do not mind. I think he is making progress and the staff here seem pleased with how he is doing.
I feel less frustrated because I know he is getting better and we can do this. I appreciate everyone’s advice and support. Figuring out the breastfeeding relationship in a hospital, on a set schedule, is grueling, but we seem to be doing ok.
My progress has been harder because I have been battling mastitis in my left breast. It has been uncomfortable to very painful off and on for a couple days now. Heat, massage, Tylenol for the fever, and long pumping sessions have helped. I was feeling sorry for myself yesterday because I know the best cure for mastitis is to go to bed with your baby and nurse and sleep for a couple days. I want to do that!
Ries talked me out of my pity party. I have rarely given in to the “I wish X” thinking through this, but yesterday I was feeling crappy. I heard from several people that mastitis was painful. They were not kidding. One more hurdle for me, I suppose.
Today is another day, camped out in Gideon’s room. I owe several people phone calls but I mostly only leave to eat, go to the bathroom, and pump. It is a routine in which time loses all meaning. Phone calls, except to update Ries, take a back burner.
Posted in children, nicu, pictures on May 29, 2008| Leave a Comment »
Gideon is currently sleeping like a log. He kept himself awake most of the afternoon and night, fighting sleep like only babies and small children can do. He finally went into a dead sleep between his 3 am and 6 am feeding. This resulted in him turning his nose up at the boob at 6.
I think maybe he just needed his dad to be here to give him a booby pep talk. I am not sure what is involved in this sort of cheerleading session, but I suppose that is a secret between Ries and his boy.
Posted in breastfeeding, nicu, updates on May 27, 2008| 7 Comments »
I promise to write a longer post later about what it is like to live in a NICU room with a baby. Like any new Mom, I only have the minutes this moment to type while I wait for the sleeping beauty to finish his nap and be hungry.
Because Gideon was so sick and eating is such hard work, any eating, bottle or breast would be an uphill battle. Breastfeeding is more challenging because it involves me and the doctors have no idea how much he is getting. Amounts are very important in hospitals. Everything is measured and this is no different. As a result, here is the course of action the doctors, nurses, and I are taking to get my little man to eat what he needs to so he can go home.
Gideon gets fed every 3 hours. I try to breastfeed him right before his feeding time. I have to hope he is hungry and not too sleepy for us to be successful. We will weight him before and after I feed him and they can use his weight to estimate what he is getting. They will subtract that amount with what they want him to have (currently 70 cc or a little more than 2 oz) and tube feed the rest. I think it is a decent plan that makes everyone happy. The doctors and nurses have something by which to judge his progress and I get to feed my boy.
He did get a bottle at 12 and he will get one at 6, but those may be the only ones he receives. They wanted to check his actual sucking mechanics to make sure he had no muscle damage and see to see how much he would take. I think he got less from the bottle than from me as he was not that interested in it. *shrug*
Gideon and I are doing fairly well with the breastfeeding. As long as he is amenable, read not sleepy or grumpy, he will eat for 7-10 minutes on one side without a nipple shield or extra help. I think that is pretty darn good for only a couple days of effort.
It is still hard and I feel more pressure with the weighing business, but I know we have to do it. The nurse practitioner seemed to think it will be 7-10 days before he will get this down enough to go home.
In other Gideon news:
I hear rumblings from the bed. Please excuse typos. Wiggly babies come first.
Posted in breastfeeding, children, nicu, updates on May 25, 2008| 9 Comments »
Michelle and I are spending our Memorial Day weekend like any other parents, with our kid. Today Gideon got out his PIC line so he no longer has anything that provides a source for infection. They were able to do this because they have canceled all his intravenous feeding. He is now getting 70 CCs (~2 1/3 oz.) every three hours. The only things tying him down now is his nasal cannula, his feeding tube, and his monitors.
We have just a few more obstacles to overcome. He has to be weaned off his morphine, which will end this week. Otherwise, the biggest obstacle remaining is learning how to feed. Michelle tries every time now that he feeds. I think he is sucking on his pacifier better now so I don’t think he has an oral aversion. However, I think he is becoming frustrated when he can’t keep all of Michelle’s nipple in his mouth. It is very frustrating for Michelle and I know she gets worried every time they mention the word bottle.
We have just one specific prayer. We pray that Gideon learn to latch on and learn how to feed on his own. I also pray that Michelle be given the patience and perseverance that is needed to work with her son. This is very important and very hard on her.
–Ries, keeping the praying up, in bad times and good
Posted in children, nicu, pictures, updates on May 24, 2008| 3 Comments »
It’s hard to even recognize this room any more. The Nitric Oxide tanks are gone, the ventilator is gone, several drug pumps are gone, a monitor has left and now we have graduated to an honest to goodness crib. It’s like he’s a real baby now.
Michelle is working on the beastfeeding next to me as I write this. They have increased is milk feeding to 58 CCs (~2 oz) every 3 hours. They will be canceling his nutrition IV either tomorrow or Monday. At that point they will take out his central line and give his morphine in his feeding tube. The morphine will also be decreased in frequency to every 6 hours. His nasal cannula will also come out soon, but we don’t know when. He is currently about as low as he can go and they always come out anyways. Progress, all good progress. Of course Michelle worries about the breastfeeding but that’s who she is. She has to worry about something. And I can’t forget to mention that Gideon is wearing clothes today for the first time. He had on a t-shirt when we came in this morning.
I also think he is getting cuter everyday. Just when I think he can’t be more adorable they take something away from his face to reveal more of that handsome mug. I still feel some guilt that he may be hogging up some total cuteness reserves from the world and that there will be nothing left for all the other puppies, kittens and babies left out there. We must conserve our precious resources.
Ries –globally conscientious
Posted in breastfeeding, nicu on May 23, 2008| 5 Comments »
Today, I am back on my day job, watching the Gideon do baby things in the NICU. He is doing great today. Rounds have taken extra long today, so I have not talked to the doctors yet. The ventilator has been moved out of Gideon’s room and he now has no extra equipment in there with him. What a change!
We, my boy and I, practiced breastfeeding today. It was not a non-nutritive feed, just a regular old let’s give this a go session. It will take awhile for Gideon (and Mom) to get the hang of things. He has had so many unpleasant things in his mouth and throat that he has to figure out that breastfeeding is good. He sucked a bit but mostly just wanted to snuggle with Momma. The consultant said that was ok and to just practice for a couple days and see if he gets the hang of it. We are going to try again at 3 when he gets his next feeding. Gideon still has a tube in his belly, so he gets food in his stomach while we practice sucking.
It was dark and snuggly during our first session, so we both dozed off. It is so easy to fall asleep with a little bundle of warmness in your arms. I see that I am going to get nothing done once we go home. So far, the alert and less medicated Gideon is turning out to be a very calm baby. I am not sure he will stay that way or what I, terrible child that I was, did to deserve such an easy go lucky child. I know for a fact that his dad was also a handful, so neither of us should have such a kid. (of course Ries asserts he was a perfect baby, but I know for a fact that was not true).
I suppose we are just lucky.
Tomorrow, Ries and I will both be back at the hospital. It may be Saturday on a holiday weekend, but it will be just another day in the NICU for us. We hope that you all enjoy yourselves. Have a cold drink for us and have some fun.
Posted in children, health, nicu, updates on May 22, 2008| 5 Comments »
Michelle is in the Milk Bank pumping so she hasn’t heard this news yet. We left so he could get his X-ray taken. Before I could even get logged onto WiFi the nurse practitioner came out with the news. His X-ray looked good! That means he doesn’t have to get back on the CPAP. Gideon may not realize it but he should be very happy about that.
Gideon was such a sleepy boy today. He slept most all of the time we were in there today and our nurse commented on how well behaved and easy a baby he is. That was in between all the times she was saying how handsome and precious he is. Which, of course, is the truth.
Michelle will be even happier because I asked if she could try to breast feed tomorrow. It will be a non-nutritional feed, meaning that she will pump beforehand. She’ll just stick a nipple sandwich (I love that term Justine) to his mouth and see what happens.
God answered more of our prayers today. He’s Awesome!
Ries –Thank you, G-man.
Posted in health, nicu, pictures, updates on May 22, 2008| 1 Comment »
We were really excited this morning when we walked into see Gideon just after they had rounds. Too our surprise he was laying there sleepy, contented and no more CPAP! Just the nasal cannula. We weren’t expecting him to come off that until tomorrow.
However, our excitement has been tempered since then. One of the doctors came in and talked to us. Apparently, his X-rays looked worse this morning. There were some areas of his lungs that were not opening up all the way. He has another X-ray today at 4:00 PM. If his lungs don’t show improvement then he will have to be put back on the CPAP with possibly more pressure and they will have to figure out a way to keep his tubes more firmly in his nose. If that happens he will likely have to keep the CPAP on through the weekend.
We are praying specifically that his lungs get just a little bit better before this afternoon so that he doesn’t have to go through with that.
Other than that he has had a relatively peaceful day. He is much more comfortable without the ventilator or CPAP. He did have one other set back where he spit up what seemed to be most of his milk feeding. This, of course, made Michelle cry and exclaim that he was having a bad day. Which he wasn’t.
On other updated fronts:
Just keep praying for Gideon, he has a few more steps he has to take before we can even think about taking him home.
–Ries, the battle is not yet won
Posted in health, nicu, updates on May 20, 2008| Leave a Comment »
I am at the hospital today and I was hoping I would be able to hold him today. But Gideon has a busy day planned for him so I will exercise some patience and wait until Thursday.
What does Gideon have planned for today? Well, I’ll tell you.
There is some concern about his adrenal glands. He had some adrenal hemorrhaging while on ECMO and so now his adrenaline output is not what is considered normal. So they took a blood sample (heel prick) then gave him a shot of cortisol. Then they took another blood sample a half hour later and then another an hour later. This of course made him agitated and we spent most of the morning soothing him. But then he responded real well to being swaddled and finally went to sleep.
He also spit up quite a bit of mucousy flem (that’s good) and made quite a bit of poopy in his diapers. That, of course, didn’t really help out his agitation level. But then Michelle got to change her boy’s diaper for the first time. I think that is probably the most excited she will ever be to perform that job. Kind of like when you can’t wait to get your driver’s license but now you can’t stand to drive anymore.
We didn’t have to worry about him spitting up his milk along with the flem. That is because they are not feeding him. They need his belly to be empty for his big test this afternoon. At 3:45 he is getting wheeled out to get an MRI. They don’t have any specific concerns but they just want to make sure everything is okay after the experience he has had with the ECMO and the hypoxia.
The good news is that after the MRI they are going to assess his ventilator. Right now they have weaned him down to minimal ventilator support. After the ventilator they may extubate him (take out his tube). The doctor told us that if they didn’t do it this evening that they would do it in the morning. We are very excited about this. This is why I can be patient until Thursday because it shouldn’t be nearly the production to hold him. After he comes off the ventilator he will be put on CPAP. I have been corrected that the CPAP is not the mask. It is still just the tube with the two nose prongs. The difference between the CPAP and the nasal cannula is that it is still hooked up to a machine that pushes pressure into the lungs.
We are very pleased with Gideon’s progress and we have God to thank. He blesses us many times over. We are now beginning to allow ourselves to think about when he may come home.
–Ries, happier every day
p.s. For those that don’t know and can’t get enough pictures, Michelle posts a lot of pictures on Flickr
Posted in happiness, nicu on May 19, 2008| 13 Comments »
I was able to hold Gideon today for an hour and a half. He was awake for part of it and then just went to sleep. I surprised myself by only crying a little at the beginning and then at the end when I gave him back. It was so nice to have his warm little body in my arms. So sweet. I wanted to kiss him all over his face. Ries will be here tonight and I am hoping that he can hold Gideon then.
Gideon did great and kept his stats up, though he was displeased at being moved from his bed. He is being weaned off his morphine and thus is more alert than he has been. As a result, Gideon also fights his tube more than he did before. Hopefully, he will only have the ventilator in for a couple more days. He is doing great today.
Defying Genetics 