They decided that a total gain of 25 gms was ok.
All tubes and wires removed! Emma is ready to go home! Look at her excited smile.
emma: July 2007 Archives
I have a specific prayer request that I could use a lot of help on.
Jess has been nursing Emma and Emma is a good eater, Jess has a great supply, the mechanics are going well, BUT,
Emma isn't gaining. In order to go home she needs to start gaining weight. At least 30 gms/day (that's one ounce).
Emma is doing everything else she is supposed to be doing. As you can see from the pix, she is bright eyed and alert.
Please pray specifically that she will start gaining weight so that she can go home to be with her mom.
When Jess was little, there was a show on Nickelodeon called "Today's Special". I think it was an import from the CBC, but I could be wrong. For some reason, the theme song to that show has been playing in my brain ever since I saw today's picture.
Somehow, the nurses managed to get Emma into a premie sized outfit! Pretty amazing considering that her weight is in excess of 3600 grams.
She's continuing to eat and digest real food (aka momma's milk) even with her vomiting and spitting episodes. Her TPN is being steadily decreased. We still don't have a discharge date planned yet, but the wheels are turning in that direction.
I firmly believe that every prayer has made a difference.
This is what greeted Jess when she got to the hospital today.
The nurses had fun dressing her up for Sunday.
It has been a rocky week, though. Emma had some episodes of vomiting and they backed down on her feedings. They started her at 30 cc every 3 hours, and upped it regularly. But when they got to the point where she vomited, they backed it down to 20 cc every two hours. They also reduced the thickening agent from nectar consistency to honey consistency, and that has also helped. Here is her auntie B feeding her.
The plan is still to eventually get her taking her momma's milk directly from the producer. Pumping is an exhausting full-time job, whereas nursing directly is simply a full-time job!
At least now, with the tube count down to one (her central line) and the monitors less critical, Emma can be swaddled like a normal baby (or a burrito/egg roll).
She is also using an orthodontic pacifier for suck training, and she has figured out how to hold it in her mouth herself.
Jess emailed me the picture she took of me saying byby to Emma last week. Has it only been a week? I sure miss my girls.
Anyhow, she seems to be making progress, in general. There have been setbacks but we can see that she will be going home soon, if not as soon as we had hoped.
I wish that I had more flexibility in my work schedule, but it is what it is. It would also be nice if there were decent train or air travel schedules from here to there......
After she pulled out her NG tube, they decided to leave it out and just keep nipple feeding her. Still not on the breast directly, but right now the goal is to get her to the point where she can be off the TPN and on 100% oral feeds. She is close to halfway there right now. They are starting to talk about discharge planning. Keep up the prayer.
This post is a little late because John and I went to hear Dawn Eden speak in Chicago. More on that later.
A patient needing further investigation will most likely receive a Modified Barium Swallow (MBS). Different consistencies of liquid and food mixed with barium sulfate are fed to the patient by spoon, cup or syringe, and x-rayed using videofluoroscopy. A patient's swallowing then can be rated using the Penetration Aspiration Scale. The scale was developed to describe the disordered physiology of a person's swallow using the numbers 1-8 (Rosenbek et al., 1996). Not all examiners will use this scale.(from wikipedia)
In this case, they used a bottle with various kinds of nipples.
Emma was not happy with this test. She was hungry.
Emma's mom and I were not happy with what was recommended. Thickened feedings (breast milk and a gelling agent) with a cross-cut bottle nipple. Emma also managed to pull out her NG feeding tube.
It was not a good day. Stay tuned. Keep praying.
Awake here, this is just after she was fed.
If you look really closely, you can see her Miraculous Medal pin hanging from the Emma towel.
Her shirt - well there is a story there. She is limited in her clothing choices, but we want to dress her up if possible. So my youngest daughter and I took needle and thread and sewed decorations to her undershirt. This is also helpful so that they don't disappear in the hospital laundry. I sewed the blanket stitch on the one in this picture.
This was actually the last picture I took before I hit the road earlier today. I made it home OK. Back to work tomorrow at the usual grueling schedule.
Most recent update - they are changing her TPN, it will be a lower level as she seems to be tolerating and absorbing the nutrients from her gut.
We had a few errands to run today before getting to the hospital to be with Emma. I am leaving tomorrow and will not be able to be back for quite a while - I've used up almost all my time off and I still have a wedding to go to later this year.
Emma is up to 15 cc per feeding now. We have been here about an hour and have had to change 3 wet diapers. She is still getting most of her nutrition from the TPN but I think that they will have to start tapering that down. Jess is pumping incredible amounts and her freezer is almost full of milk, there is barely room for ice cream or frozen veges! We brought in about 3 days worth of pumping to the hospital and were told that they are running out of room here as well.
The kangaroo session went very well. She nuzzled and snuggled and looked very interested in this whole skin-to-skin stuff, but after a while she started to get fussy and we realized that she had a wet diaper. She hates being in a wet diaper.
So it has been a great day so far. I am going to hate being away from her. Hopefully my daughters will send me daily picture updates.
stblogs.org was down yesterday so I couldn't post this. Emma is making great progress. When we left the hospital last night, she was on room air and maintaining oxygenation at a normal level. Thay had advanced her feedings from electrolyte solution to colostrum, and had advanced the volume to 10 cc every 3 hours. The neonatal nurse practitioner also wrote an order for Jess to start doing 'kangaroo care' where the baby and mom spend time skin to skin. We left last night before starting that as we were all pretty tired.
Emma has had a stressful morning. When they tried to give her a nipple feeding two nights ago, her blood oxygen levels dropped and so they stopped the trial feedings. Today there was an informal team conference where the plan of action was discussed and argued over until we came up with one that everyone could live with. It was emotionally draining. I don't think that the medical staff is used to family that respectfully disagrees with them on any points, major or minor. It is a fine line to draw between respecting the professional's specialized knowledge and skill, and requiring that the patient be treated as an individual. It is very easy to get put on the medical roller coaster of standardized care - and while standards are very important, there is an art as well as a science involved.
Hospital personnel (and I include myself here, as I have seen myself fall into the same pattern) become so accustomed to the technology and the pathology in their environment that they can fail to recognize just how scary it call all be to the unititiated. Take that staple screening tool of the inpatient - the chest x-ray(CXR). If you see a radiology tech pushing the portable x-ray through the halls of just about anyplace, it is a fair bet that he is either coming from or heading to doing a CXR. Elevated temp? Elevated white count? Unexplained just about anything, the diagnostic workup is likely to include a CXR. If you add in those done to confirm the proper placement of a tube, you can see that lots of them could be done on one very small child. How much is too much? and when does one truly need to be done?
When you have a baby like Emma who is a 1 in 25,000 cases scenario, with 2 major congenital anomalies but normal chromosomal exam, it gets even more complicated to know what the best practice and care should be. I worry that her neuro docs and her GI docs/surgeons are not always talking to eah other. Further complicating the care is that she is assigned a neonatologist as her primary care physician. This guy is supposed to co-ordinate her care but I am not sure that this has been happening.
Anyhow, we are working on it all. Specific prayer request for all of you. Emma is getting tube feedings starting today, and on Monday 7/9 they will try to nipple feed her again. If she tolerates that well, they will continue. But if not, they will have to do an x-ray procedure to see if she has issues with swallowing that might be an ongoing problem. Please pray that the tube feeding will go well and that the nipple feeding will as well. Thanks.
Cell phone pix aren't the best but they are the fastest way I have to keep things up to date.
Emma's Auntie C saw a dress as Target and sent me the picture, I was able to find it here and today she is wearing it. It is a great because it snaps all the way down the back and so we can put it on her with all her tubes and monitors.
She is getting to use a pacifier for suck training and for soothing. She has a great suck and we are hoping that eventually she will get to nurse directly.
For some reason, the cell phone double exposed this one, but the expression is so cute that I saved it anyhow.
I finally have access to some of the very early pix that were taken on a real camera. I may post one or two after I look them over for suitability.
We have had some wonderful nurses here at the Children's Hospital. Today we brought them in a loaf of Amish Friendship Bread (I dragged my starter with me down here so that it wouldn't die in my absence).
Her NG drainage tube is clamped off, and if she tolerates that they will give her a test feed of a teaspoon of oral electrolyte solution to see how she does.
I can't believe that she is now nearly 2 weeks old! Her original EDC is the day after tomorrow....
Her mom so loves to hold her, and it is so hard with all the tubes and wires that she still needs. But where there is a will, there is a way.
This is a really bad cellphone picture, but it is what I could get. Today has been what I have been calling picture day. She has been getting ultrasound pix of various parts, and x-rays, and later today an MRI. Part of this is the genetics workup and part is just routine for her conditions.
She has been doing really well today. She has slept well with minimal fussy periods, and she is calming and soothing more easily than even two days ago. She has also had periods of quiet alertness where she just seems to be taking in everything. She definitely recognizes her mother's voice and touch. Her NG tube is showing minimal drainage and she has been peeing and pooping, both of which are very good things. I am hoping that they will soon feel comfortable starting her on real feedings.
So I made it back here yesterday after a 10 hour drive. Saw Emma last night around midnight for about 10 minutes and now I'm back again. This pic is almost in real time - I have to send the pic from my cell phone to my email, save it, upload it, and then here it is. That is my hand holding her arm. And somehow, the nurses managed to get her into a onesie that says "little miracle". It's a miracle to me how they got her into it with all of her tubes and lines!
She's doing OK. Has had some fussing last night, and they are watching her closely to be sure that her heart rate doesn't get too high. Pain management is important but difficult for newborns, and in her case it is complicated by the fact that she can't have anything by mouth yet.
Her mom has a freezer full of milk just waiting for the day.
She is smiling at me right now, and her eyes are opn and looking around. bye!