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IMG_1282

Originally uploaded by Wandering Eyre

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.

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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.

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There and Back Again

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.

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[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.

  • Breastfeeding, though natural, does not come naturally for mothers or babes even in the very best environments.
  • Women are told all kinds of things about breastfeeding, their milk supply, and problems that are simply not true from people who simply do not know enough about breastfeeding to be giving advice.
  • Some other mom, with a baby in the hospital might be able to learn or pick up a few tricks from what Gideon and I did. For clarification, I am not writing this as advice or a recommendation. Just a story of what worked for us. Please seek a professional lactation consultant or support group, like Le Leche League, for specific advice. Actually, seek that advice regardless, eventually you will need it.
  • The more we talk about our breastfeeding experiences, the less misinformation will be available for women.

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.

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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.

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IMG_7281

Originally uploaded by Wandering Eyre

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.

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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.

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