March of Dimes

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MOOMOM'S JOURNEY

Dragonfly74

March 2010

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WONDERFUL DAY!!

Mar 16, 2010 07:59pm (EST)

Today was one of those days where you want to shout from the mountaintops, grateful for everything good in your life! I finally got to try to breastfeed Lucas. After 3 months of pumping, this is what its all about. We were suprised, he latched on pretty quickly, and went to town sucking. We didn't force it, his wonderful day nurse Patty helped me, and we just let him do his thing. He sucked for a few minutes, then napped off and on lol. After a few minutes Patty gave him his usual feeding through his ng tube so he wouldn't get fussy from being hungry. It was really an amazing experience. He is also up to every other feeding on the bottle, and he is doing really well with those. He is down to 3 litres of o2, at about 30%. The doc actually used the words "going home" he figures in a week or 2. That is the first time they have actually used those words with an actual time frame lol. They found a crib for him so now he has more room to move around, and they put some things in it for him to look at so he isn't so bored. His swing arrived today, Daddy is putting it together. I can't wait to get home from work to see it! All in all it was a great day!!

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HOPEFULLY THE LIGHT ISN'T A TRAIN!!

Mar 12, 2010 06:52pm (EST)

Well we are optimistic that Lucas might be able to come home by the end of the month. I know its bad to get your hopes up for that, but he is progessing so nicely its hard not to. He is actually on prednisolone, which seems to be working because they have lowered him to 5 litres, 30-35% o2. They haven't had to give him any lasix in 5 days and he looks great! No bags under his eyes or anything, he just looks like a healthy happy baby. Yeaa!! We are slowly starting him on bottle feeds, 1 a shift so far. He is building up his strength and every day it seems he is doing better with it. They want to put him in an actual crib but our NICU is so crowded at the minute there isn't any room. Its weird we went from 3 babies to 16 in like a week! The hard part is he is getting so old now he is very alert and bored. A nurse found a swing for him so that has been helpful, he seems to really like that. Its been quite a ride, but it ain't over yet!

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MY PRAYER

Mar 10, 2010 08:50pm (EST)

Lord please give me the strength to make the right decisions for my son. Help me stay patient, and understanding with everything going on. Help me bite my tongue, and hold my temper when I feel things aren't progressing and people aren't listening like I feel they should be. I have needed your strength in these past 11 weeks like no other time in my life, and I thank you for helping me keep the peace for this long. I have faith you will help my son recover, and bring him home to us when you feel the time is right. Thank you ~ amen.

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STEROIDS ROUND 2

Mar 08, 2010 09:12pm (EST)

Well the doctors feel like we need to give Lucas a little bit of help for his lungs. They did a bunch of research and decided another round of steroids might help. Prednisone this time. I hate that they have to give him steroids, it worries me, but I am praying it helps him get to an o2 setting where we can start progressing to get him home. He is stuck again, just like when he was on the vent and they helped him get off that so I am hopeful. He is up to 6 lbs now lol where did my preemie go?? He had an eye exam last week and the doc said his eyes are fully matured without any issues. Yippeee!! That is always another worry when they are on o2 for so long. So many worries so little time lol!

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CRASHING DOWN

Mar 04, 2010 09:38pm (EST)

Yesterday I was reminded about the roller coaster that stops in the NICU every hour. We had avoided the coaster for several weeks now, so I guess it was our turn to ride. Yesterday morning Lucas' nurse noticed his oxygen requirements were going way up, he was at 60% which is high for him. So the doc ordered an EKG and echo to make sure he didn't have a pulmonary hypertension starting. Luckily all that turned out negative, but it doesn't explain why he suddenly needed more o2. The doc stopped all bottle feedings and put him back on CPAP. I broke down when they told me this. I was hoping for smooth sailing until we could bring him home, but I think the bottle feedings tired him out too much. They were very quick to up him to 2 bottle feedings a shift, but I think it was too much for his little lungs to handle. He does things at his own pace, and anytime we try to push him he pushes back. I was a wreck yesterday, and my husband had to remind me of everything I should be grateful for. His only issue is his lungs, and for that I am thankful. I read on here about babies that have a multitude of issues and it breaks my heart. Lucas is back down to 35% o2 today, and seems much happier. So we will just take this day by day, grateful for what we do have.

athena3

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LEAPS & BOUNDS

Mar 01, 2010 09:25pm (EST)

Its amazing how they suddenly progress so quickly!! 3 days ago Lucas was put on a nasal cannula full time (finally- no more cpap!!) and yesterday he got to eat 1/2 a bottle each shift. I had no idea they were going to try feeding him already. I called to see how he was doing and the nurse said they had tried it and he did great! We went up to see him last night and I got to feed him a bottle. It was sooo cute, he was going to town with the best look on his face. The NICU experience really teaches you to appreciate all the little stuff. He is up to 5 lbs 7 oz now, he almost puts on an ounce a night lol. We still have our fingers crossed to have him home by his due date, March 20th. I think he's decided while the nurses are nice and all, he really wants to come home!

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GROWING LIKE A WEED

Feb 18, 2010 11:03pm (EST)

Well Lucas is up to 4 lbs 14 oz! Nurse says he has some edema but not much and it should clear up on its own without lasix. I actually asked the nurse if its normal for him to gain so much weight every day, (since last night he's gained 3 oz) but she said its perfectly normal. I guess he would still have 4 1/2 weeks gestation left which is when they pack on the pounds. It just seems so weird to see it happen lol. Its funny how Nicu parents focus on weight, at least we do, when really it doesn't mean much. He could weigh 10 lbs when he finally gets to go home, if his lungs aren't doing better nothing else really matters. I mean its great he's gaining weight, it will surely help his lungs develop but the doc is still concerned he has to be on so much pressure on the cpap. I guess only time will tell the outcome there. He moved up to a big boy bed today too! They took him out of his "pod" (isolette) and put him in a "bucket" (basically a plastic basinette). He is doing great regulating his body temp which is sooo good to hear, and he finally gets to wear clothes so he looks like a baby now lol! All in all I am grateful he is doing so well considering his start in life. It is hard to see them make such slow progress, but forward is better than backwards! At least he doesn't have the tube down his throat anymore. He cries when he's hungry, and loves to gnaw on his binkie. Best wishes to all the NICU mommies out there - keep the faith!
~Nicu stay: 8 weeks and counting~

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KANGAROO CARE ROUND 2

Feb 12, 2010 09:16pm (EST)

So late last night we tried kangaroo care again. The first attempt went horrible. I think really it was just bad timing, Lucas was only off the vent 2 days, it was really noisy and bright in the NICU, and he was coming down off the steroids. I have my own theory about coming down off the steroids, the nurse didn't know if there were withdrawls or not but he was sure fussy a few days after they stopped them. So anyway the first attempt they put him on my chest and he stopped breathing. His sats dropped down to 50% fast, so the nurse grabbed him and put him back in his pod, after which he stabilized after a few minutes. Sheesh talk about rejection! I tried not to cry, not to take it personally but it was hard. So I was a little hesitant to try it again. He does really well when we hold him, so I was hopeful. Last night I did a midnight milk run after I got off work and the nurse had just given him a bath so she suggested we try it to warm him up. It was absolute heaven! He fussed for a minute but settled down and fell back asleep. I sat with him for an hour. When he did wake up he was smiling and making those cute little baby faces. I can't believe after all he's been through he can smile. He makes me so proud! Oh and he's up to 4 lbs ~ almost double his birth weight!

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PEOPLE SAY THE STRANGEST THINGS...

Feb 09, 2010 07:22pm (EST)

Thank you everyone for your kind comments on my last entry. It helps knowing there is a whole group of people who know exactly what I am going through. Thats not always the case with friends and family. I know they mean well, but I can see the look on their faces when I tell them what happened that they have no idea what to say. I can see them wrestling with "I'm sorry" and "congratulations". When someone has a baby you say "congratulations"! Why should it be any different just because he was 3 months early. Where does it say you only get joy from people and flowers and cards if your baby makes it on time??? I really like the "friends" who find out what happened, have a hard time knowing what to say, and then just don't call anymore. Sheesh what a way to find out who your real friends are! I understand people have a hard time in general with this stuff, but you could at least be honest and say "I don't know what to say" so I can tell you what you should say lol! When someone says they had their baby and they are ___ months/weeks early you can say "congratulations, I'll say a prayer/ keep them in my thoughts". That would be the most amazing thing to say, and would really touch the parents. And please don't tell us the horror story about your niece/nephew/cousin who was born premature and had oodles and oodles of problems. We know this can happen, trust us its in our minds constantly, we don't like to dwell on that part. Whatever the outcome ends up being with our child we are grateful they came so far compared to how they started life! If you have a great story about someone who was in a similiar situation and came out fine share away! We need positive thoughts!

Lucas update - he is still plugging along on CPAP. He was having issues last night with his sats, co2 was getting a bit high and he was fussing alot. The nurse called the doc in a panic wanting to re-intubate him but the doc said unless he is blue and going downhill quickly he will not re-intubate him lol. That was encouraging! He does not want to go through weaning him again unless its absolutely necessary. Fine by me! I think the nurse was just new to Lucas and doesn't know all his oddities. Preemie antics one nurse referred to them as lol! If he doesn't lay a certain way his sats drop quick. Oh well at least the doc set her straight lol!

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SO FAR

Feb 08, 2010 11:25pm (EST)

My husband started calling me moomom. I guess I helped that along because every time I sat down to pump I would make moo'ing noises. Its amazing what you do to get yourself through that torture every 3 hours. I knew I wanted to breastfeed my baby, but I had no idea how hard it was when your baby was born at 27 weeks. I don't regret it, nor would I stop just because its a pain. At least I feel like I'm doing something for my baby. He was born Dec 22, 2009 via emergency c-section because I had HELLP syndrome. He was 2 lbs 1 oz when he was born, and is up to 3 lbs 3 oz currently. His main issue has been his lungs. They gave him a week of steriods and was able to get him off the ventilator last Wed, we are hoping and praying he is able to maintain his airway. He has been fussy the last few days, he does not like the CPAP, but he was the same way on the vent. He pulled his tube out several times - those little hands are strong! My DH and I are coping, I think thats all you can do when your baby is a NICU resident. We still cry at sappy commercials, and have a hard time listening to the radio. Carrie Underwoods "Jesus take the wheel" always gets me. We realize this is all out of our hands, and whatever happens to him happens for a reason. He is such a little fighter, he has already taught me so much. This is such a different experience than anything in life. When you lose a child you grieve and eventually get closure, but when your baby is in a long term fight for their life when do you ever get closure? We have no idea what his outlook is, he could be perfectly fine or he could have all kinds of problems. Every time the phone rings we jump, terrified its the hospital with bad news. We try to stay positive, because he needs us to be positive.

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