Just Moments after birth while still in the operating room. Happy Birthday Emma Grace!
Monday, 3/20/06, 2:00 A.M.-
Emma:
NICU (neonatal intensive care unit) Director came in to inform us directly that there had been a change of status with Emma. There was an I.V. Started at around 5:00 p.m. on Sunday, 3/19/06, to provide fat nutrients with something called fat emulsion. Apparently, something malfunctioned with the pump which was administering the emulsion and Emma was given too much. This resulted in fat deposits pooling in her lungs. Her biliruben levels were at 5.9 and anything above 5.5 for her requires the bili lights. So the bili lights were started. She will be under lights for at least two lights while they monitor her levels. Her o2 was turned back up to 35% from 24% earlier in the day (21% is essentially room air). She needed her o2 turned up since the fat nutrients which pooled in her lungs made it harder for harder for her to breathe. Her blood pressure needed to be stabilized so she was started on Dopamine and is also being given pain medication for comfort and to keep her more stable. Emma was stable but struggling at on a 1:1 ratio with the nurses at this time.
Me:
I was doing okay. I hadn't slept yet despite their best efforts with pain medication and benadryl to help me get some rest. I was pumping every 2-3 hours to try and get what liquid gold I could for my sweet daughter. After the NICU director came and spoke with me at 2:00 a.m. I went to visit emma. I had pumped 25 cc's from both breasts combined which was a great increase from previous sessions resulting in only 5 cc's. apparently any colostrum at this time is excellent considering most moms of preemies take much longer to produce anything. Guess it helps that Lily only weaned herself 2 months ago. (I plan on trying to get her back on the breast when my milk comes in at least once a day to help out my supply and to also try and give her the extra attention she will need through all of this). Unfortunately, my left nipple was slightly cracked and bleeding. I am hoping to curb this problem with some lanolin before it becomes a bigger issue. My catheter and I.V. were removed Sunday afternoon and I was able to finally shower. I felt so relieved to shower and be clean and it was definitely a boost to my self esteem and mood. I felt somewhat human again. I also took off my dressing which was covering my incision. I was feeling great with only minimal pain. On Vicadin and Motrin around the clock. Vicaden every 4 hours and motrin every 6 alternating. This managed my pain for the most part. I was recovering remarkably well and aiming to be discharged early that morning to go rest at home. We are blessed to only live 3 miles from the hospital and to have a wonderful nanny and supportive family to help take care of the kids and allow us to be accessible to the hospital and to Emma as needed. I will be updating this blog as I get more updates and as I get more pictures. Hopefully daily, sometimes even more than once daily.
Monday, 3/20/06, 6:00 a.m.-
Emma:
Went to see Emma. I was there just in time to watch some of her care. She was weighed and was 2 ounces down from her birth weight so she was weighing in at 2 pounds even. Because of all her I.V. Lines and intubation tubing and what not moving her onto the scale to weigh her was a good 20-25 minute ordeal. She gets stressed during this and shows it by her o2 levels dropping below the 90% range. They typically up her o2 flow to about 90-100% to combat this problem and wean her back down after her care. Unfortunately due to the extra fat deposits from the pump malfunction her bilirubin levels went up to just over 6. I didn't get an exact number. Due to the extra fat deposits she was more stressed and needed more o2 to breathe so her o2 levels were upped to 75%. A little disheartening for mommy and daddy. This was an eye opener of just how touch and go the NICU environment can be, and how much of a 2 steps forward, one step backward ordeal this would be for the next few months. Anyways, a head ultrasound was ordered for later in the day to check for bleeding on the brain which is common for preemies her age. There was also an echocardiogram ordered for her heart to check on a murmur that was found. The murmur may or may not have been caused by the pooling of the fat emulsion. Basically there is an opening in the heart which normally closes before birth but occasionally (especially in preemies) it does not and will either close on it's own after birth or drugs will be needed to help it out. In the meantime the opening causes more stress to the lungs which requires a higher oxygen percentage that baby needs to get. Her dopamine had been stopped and her blood pressure was stabilized.
(Goes to show how quickly things change in here). She is stable again, but still be watched very carefully.
Me: 6:30 a.m. I was able to pump 32 cc's between both breasts. I am thrilled that the pumping is going so well considering all the stress. When she starts gavage feedings (feeding through a tub which right now goes through her mouth and into her stomach) she will only be getting about 20 cc's ALL day long. so this should be MORE than enough for awhile. I will just keep pumping and freezing for them. It's the best thing for a preemie. 8:30 a.m. I pumped 17 cc's. For now I will keep record of each pumping session until one of a few things happens. A) I start forgetting to chart how much is pumped. B) I get sick of reporting it and feel you are sick of hearing about it. or C) she is on the actual breast (which won't be for a few weeks to go still).
10:30 a.m.- Dr. came to see me. Everything checked out well. I was discharged and given some steri-strips and a staple remover to take to the clinic the next day to have my staples removed. Ordered to continue my meds 24/7 and given all the "regular" mumbo jumbo discharge information. I pumped one last time and dropped off the milk in the NICU and checked on Emma real quick before leaving to go home. it wasn't as hard as I expected to leave her there but I really don't think everything has hit me quite yet. I feel like I am in a state of twilight. It will hit me eventually I'm sure.
5:30 p.m.- Headed back to hospital with the kids and family and friends. Took turns letting everyone get a quick peek so we can try and keep visits from family to a minimal over the next few days to help reduce her stress. Grandma and Grandpa wear brought her a Stuffed Ducky and an adorable outfit. Thanks grandma and Grandpa. Grandma was thrilled as always to see her new granddaughter. Our good friends (and our rock during all of this) Susan and Mike and their daughter came to meet her as well. Susan and Mike went in one at a time, susan with me and Mike with Sean to meet her. Grandpa Nick came by as well, and was a bit emotional at seeing her. He is having a rough time watching her be so little and struggle, but she's a feisty little fighter. Sean and I took Caden in to meet his new baby sister before we took anybody else in. I thought I would be more emotional but it was more heartwarming than anything. We explained to him that his baby sister was tiny and very sick so she had to stay in a special crib at the doctor's until she grew big and strong. we also explained that he needed to wash his hands really well with mommy or daddy before he could see her and needed to not touch anything (including himself) once he was inside and to use a quiet voice. He did so great and understood more than we thought he would. He was SO excited to meet his baby sister. He held her hand through the porthole in her isolate and told her he loved her. Emma's nurse Denise is a godsend and really encourages and promotes family interaction and siblings to get involved so she was showing him the different the tubers and asked him what her name was and we got a video clip of him saying Emma Grace and that he picked it out. He actually did insist for the past few weeks that her name would be Emma. He then closed the porthole and informed us that he was "closing her door so she could get bigger and stronger." He's such a sweetheart. We let the other family and friends visit her very briefly (looking not touching). Caden insisted he needed to go check on his sister "one more time" because she "needs him". So we took him back in, washed his hands, and he went to watch her and help put her stuffed froggie animal in her bed with her and he seemed content with this now. Lily will probably go meet her briefly tomorrow.
My heart was mush. I think at this visit reality sunk in a bit more that we were leaving our daughter once again. I still am waiting to feel kicks inside of me, but then the twinges of pain from my incision bring me back to reality. I think the drugs are keeping my emotions at bay. unfortunately, I'm afraid it will hit me all at once and I'll be a mess. But for now I'll take it hour by hour, day by day.
9:30 p.m. Me:
Excruciating pain. Went out to eat since nobody felt up to cooking. Was late on taking my meds. Almost in tears. Was attempting to pump. I think my milk will be in fully tomorrow. Breasts are feeling full. Nipples are sore. Note to self: use LOTS of lanolin after pumping and between sessions. Less suction on the next pumping session. Too my Vicadin, motrin, and then cough syrup with codeine since I had a nasty coughing spell which resulted in feeling like i would die from pain. After pumping 60 cc's total I headed to bed and sleep. Sweet, sweet sleep.
Tuesday, 3/21/06, 2:30 a.m.-
Me:
Woke up from bed in pain again. Took some more Vicaden. Went out to the recliner (for what will be the remainder of the night). Pumped a whopping 60 cc's (4 ounces I believe). Doused my nipples in lanolin and made the call to the NICU to check on Emma. Unfortunately, her Nurse Terry was doing some care on her and I was informed to call back in 10 minutes.
2:45 a.m. Emma-
Emma is doing great. She was given a medication for agitation. Nurse Terry states the agitation is a good sign because she is "fighting back" saying "hey, I don't like this." Her lights were turned off and her sunglasses remove for about 15 minutes during her care so she could look around. she likes to open her right eye (her left is slightly puffy still and harder to open so she rarely opens it, although she did earlier for her mommy and daddy). O2 levels are back down to 30%. Blood pressure i excellent. Urine output is great. Cranial Ultrasound was done and showed NO bleeding on the bran which is such a relief. WONDERFUL NEWS! She will have another lung x-ray in the morning to check on the fat deposits from the "pump malfunction" in the morning. No apneac (spells in which she "forgets" to breathe) episodes, no desats (de-saturation is the level of oxygen she is absorbing and going through her blood) since earlier yesterday. She is doing once again "remarkably well, better than a preemie this age should be doing". What a relief to a worrying mama to hear from a nurse. If she continues to stay this stable and they can wean her back down to the 21% oxygen which is essentially room air than they may attempt to take out her ventilator tube and either put hr on the CPAP machine or even possibly on a small bit of oxygen through a nasal canula. How exciting. I am trying not to get my hopes up since I know this can change at a moments notice. I also know even if they take her off there is a chance she can be re-intubated if she doesn't handle it well. But I will try and focus on the good news for now! At this point they are not treating her for the small opening in her heart. There is no audible murmur right now. Apparently it can open and close but right now it is small enough where it's not causing any major damage so it will be left untreated and hopefully close on its own. They will continue to monitor her for this though. She will have another lung x-ray sometime later this morning to check on the fat deposits pooled in her lungs and they will also check her biliruben levels to see if she can come out from under the lights or not yet. Glory be to God, without him we are nothing. Thank you Jesus for protecting our sweet baby Emma and giving us the peace and strength to stay by her side and turn to you in our time of need!
I'm off to copy and paste this into my blog, update some pictures and then to bed. I update in word and then copy and paste to make things easier and more accurate in the long run. I will probably update again later tonight. It's now 5:30 in the morning. Sean is asleep in the recliner next to me and I should really head that way so I can get some more sleep in before the pain sets back in and it's time for more meds and another pump session.
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