Week 33

Everyday I walk into the NICU expecting to see my boys the way I left them...snug in their little houses secure from the outside elements. I didn't know what to think as I walked in this past weekend to see Keaton's top of his isolette open and him dressed in a hospital gown and swaddled tight. He was wide eyed and looking at me with a puzzled face as to say, "Uhhh Mom!!! Why are you staring at me??? Haven't you seen a baby in a blanket before??"! And oh how I have seen my fair share of dressed and wrapped babies...but never mine! His nurse saw my astonishment as I was talking my little boy's ear off as if he was understanding every word and she came over to explain the milestone. He was growing and was now beginning to regulate his own body temperature (something the isolette has done for him since birth) and was getting overheated with him keeping up his temp and the isolette trying to do its job by doing the same. Therefore, he is now a big boy and will be in an open isolette complete with clothes, swaddled with a blanket, and topped with a hat!!! I anticipated going home and washing all of their preemie clothes to deliver to the hospital...now to get the other three in the same environment so they can wear their matching clothes:)!!!

That did not complete our weekend! We had a wedding to attend on Saturday evening and I knew that we would spend the majority of our day at the hospital so I put forth a little more effort in my outfit and look that day. Right as I walked in to say good morning to the boys, Brock's nurse asked me to hold him so she could change his bedding. Well happy mamma me skipped right on over and cuddled my little man; only his greeting to me was not quite as cheery as mine. I felt a stream of wet run down my arm and dress which formed a puddle on the tile beneath us. I stood trying to figure out where it had come from. At first I thought it came from the Vapotherm (the machine that pushes the oxygen with water to make it humid)...but his nose was completely dry.? The well trained and more than competent nurse informed me that he had peed through his diaper. GRRROSS!!!! I could not believe he peed through his diaper just as lucky me grabbed him to hold. But I must say; I wore the pee proudly and continued to cuddle my little guy until his bed was ready...and then I hurried to clean up my dress;)!!! I knew this was just the first of many pee on occasions. And how ready I am about each and every one of those times!!!!

The week continued to bring good days! On Monday, we walked in to find the other 3 boys swaddled and in room air in their isolettes (their tops were not up yet because they must weigh so many grams; however, their isolettes are no longer heated since they are holding their own temperatures)! I couldn't get home fast enough to gather the rest of the preemie clothes to deliver to them! Camden is no longer on oxygen; he is doing it all on his little own! Keaton is no longer on the Vapotherm; he is only on the wall oxygen.

I yearn to do what little I am able to do for my children to make things as easy and healthy for them as possible. The one thing I can do is provide breast milk; however, this is easier said than done. Other than my boys, my life is centered around pumping...every three hours for 15-20 minutes. Every time I sit to pump, I anticipate that my milk has really come in...but it never is. I have tried everything from the licorice tasting mother's milk tea (3-5 cups a day), fenugreek capsules; 3 pills 3 times a day to the last resort of the prescription Reglan (which comes with its shloo of side effects). I am not producing even enough milk to feed one child a quarter of his feeding. All of the boys have steadily been on formula for several weeks now as they are all up to full feeds. I have been at odds with this dilemma for quite some time. After being on the Reglan for several days and giving it my all now for over six weeks; I have come to the realization that I am just one of those women who do not produce. Whether it be because of my pituitary tumor (your pituitary produces prolactin which is the hormone for breast milk), or just the luck of the draw; I am no longer going to feel guilty. I made a commitment to myself to do and try everything possible which I have now done. The effects of the Reglan were quite apparent as I walked in to the NICU on Wednesday and saw Cam with an IV in his head, back on oxygen, isolette down and feeds being held....I absolutely lost it. These sort of "bumps" are to be expected and is nothing new to me. I spent the day attempting to pull myself out of the doldrums and back to being optimistic and found it almost impossible. This feeling and knowing I have now done my very best in producing milk; validated my decision to stop pumping. It is easy to judge those who are not breast feeding or pumping; but you don't know what factors are contributing in their decision not to.

Two steps forward....ten back. This week has been a roller coaster; starting out on the high, hitting the low, and then mellowing out. As I mentioned above; Camden's great start to the week was interrupted by an enlarged abdomen and very high residuals raising concern and causing feeds to stop and testing to begin. After a 48 hour rest from feeds, and multiple ultrasounds and Xrays; Camden's feeds were slowly started and although nothing was found, he will be closely watched. We were also told that Camden's billie rueben levels were consistently high and he will now be on an oral medication twice a day to lower it (the numbers are high due to the amount of time he was on TPN and not feeding). This could take several weeks to months for the numbers to go down and will be closely monitored by GI doctors. 

Thursday began to improve as I sat holding Grayson. Keaton was moved from his isolette to an open crib...my little boy is growing up!!! Brock and Camden's isolettes went from closed to open to closed...now back to being open. Brock is now on wall oxygen instead of the Vapotherm. If it were not for the shortage of cribs; Brock would now be in one as well. Improvement...slowly but surely.

Keaton after we dressed him for the first time!

Holding big boy Brock his first time swaddled!

Keaton in his "handsome like my daddy" onesie

Grayson in his "handsome like my daddy" onesie

Camden chilled out crazy hair and all after his bath

Grayson tearin up his pace!!!

Brock in his "handsome like my daddy" onesie

The week ended with everyone open and out!!! Keaton is the only one who is in an open crib; however, every other boy's isolette top is now open. They are all holding their temps well! Keaton and Camden are on only 1/2 liter of wall oxygen while Brock is not too far behind on just 1 and little Grayson is trying but is still on 5 liters due to his lung disease.  Brock and Keaton have begun to show ques (signs that they are ready to attempt nippling) and will be given a couple opportunities a day to try and bottle feed. I look at my boys today and remember where we started. It is hard to think that just weeks ago my babies were fighting at a mere 2 pounds!!! Now they are all growing ranging from 3 1/2 to 4 lbs!!! They are growing up too fast!!!!! I take that back...I want them to grow enough to get to bring home, and then they can slow down!!!!