Day 6 - 4/27/2010

Ok so I decided that I didn't want to go through every day and catch up with different posts- so I'm just going to be doing a real quick summary- and I plan on making my next post a brief overview of cleft lip/cleft palate and more about his status and prognosis.

Ok, so first I want to advise anyone who may work or know someone who works at Timpanogos Regional Medical Center or anyone who has delivered or been treated here to not get offended- this has just been our experience here, and we have had some really great nurses- but this hospital is TERRIBLE! The NICU nurses have been nightmares for the most part, their on call pediatrician was awful, and we have just felt really ..... overlooked. They don't seem to really care about our concerns as parents or about the family unit and bonding. Granted- this is their job, they get to leave after twelve hours and not think about it again, but this is our LIFE.

OK........ (sigh.....)

When Rocky was born he had some breathing problems. He was breathing really rapidly- normal rate for a baby is around 30 - 60 respiration's a minute and he was over 100 a minute. The good news is that his SPO2 (Saturation of Peripheral Oxygen) was great and he was trading oxygen and carbon dioxide really well; he was just breathing really fast. So they had him under a little bubble dome thing that gave him higher oxygen and humidified the air. He was also under a heat lamp and had and I.V. He was gradually weened off of the oxygen and by the end of the next day he was just breathing normal air. He still had to have the bubble over his head to humidify the air. They gave him his nutrients through the I.V. and we tried to feed from a bottle, poor little guy just couldn't get much because of his cleft.

After two days they inserted an OG (Orogastric) tube into his stomach and fed him through that while we still would try to feed him through a bottle. The hospital gave us a couple of special bottles that are made for babies with cleft lip/palate to try and feed him- but they just didn't work. Savannah and I had actually already bought some special bottles at the advice of a family that we met that has had four children with cleft palate (The Gurlachs- they are the absolute best family that we have ever met!! WE LOVE YOU GUYS! THANK YOU!) and they actually worked really well! It was such a relief to find something that actually worked- but when we were using them a nurse came in and said that we couldn't use those bottles because they were against "hospital policy." Some of the other nurses in the NICU even objected saying he was finally getting food through a bottle- but they still refused to let us use the bottles (Even though since then I have still snuck one in several times :))

By the next day they had started to increase his feeds because he was successfully digesting what was in his stomach without and residuals (leftovers). He is now up to his full feeds (50 ml) and is getting better every day! We have had three pediatricians and everyone has said something different. Yesterday we were told he could come home today or tomorrow, and now the pediatrician that we had today said that he wouldn't be able to leave for two more weeks! Needless to say we are at the end of our ropes and have been very stressed.
After our whopping $1200 hospital bill for the delivery we are still going to have to pay for a month in the NICU! Heaven help us!- but we have had so many people visit and such great support! Thank you all!

Rocky has been doing really well and is such a sweet little baby! He is usually fairly calm and just looks up at you with his big eyes like he's trying to talk to you. Savannah and I are totally in love. I admit that it was even hard for me; at first I didn't make that "immediate connection" that people often talk about- but now he has me wrapped around his finger. Hopefully soon we will be able to bring our angel home and start looking toward the future. Please keep our little guy in your prayers! Thank you again for all your love and support!

Love,
The Fordhams