Megan and Rachel: The Early Days


 
Rachel and Megan together again
Together again ...
Let me hold your binky, Megan
Let me hold your binky, Megan
Peace, Megan
Peace, Megan! 
 

May 9, 1996

Rachel, who actually had the roughest start (apgars of 1 and 6) has been making slow and steady improvements to the point where today she hit the 3 lb mark(!) She is on full feeding (1/2 breast milk, 1/2 fortified formula) through a syringe pump and g-tube. She is still on a CPAP but just room air - this seems to help keep the number of apnea and bradycardia (heart rate drops) episodes to a minimum.

Megan, the eager one :-), has had a bit of a rough time the past couple of days. She had a large number of "episodes" on Sunday so they discontinued her feedings; unfortunately, they were unable to find an IV site for her and after a few hours they decided to surgically place a central line. The minor operation went well - however, they had trouble reintubating her onto the ventilator and we are somewhat concerned that she exhibited posturing (turned blue and had seizure-like behavior) for about 20 seconds during a period of low oxygen saturation. Later, though, the neonatologist explained that he really felt that she didn't have a seizure (since it was so brief and hasn't reoccurred) but that her body was just so fatigued that with the extra burden of secretions blocking the vent tube, she finally just gave out. In any case, we are thankful that she seems to be stable now and is getting her strength back. She is still on the vent on minimal settings but they haven't been able to restart her feedings successfully. If things go well, they will probably put her on CPAP today and maybe try feedings again tomorrow. So far all of the tests (for infection, cultures, meningitis, etc.) have come back fine so there do not appear to be signs of anything serious wrong (like NEC).

As time goes on (it will be 4 weeks next Monday) we are encouraged by their progress but it also becomes increasingly more difficult to deal with the "absence" of Rachel and Megan at home as well as the sometimes hectic and intense environment of the NICU. Hopefully, they will be able to move into the transitional nursery soon. In any case, that is what we are praying for right now.

 

May 13, 1996

Overall, this was a good weekend - Karen's first Mother's day! Initially we were a bit apprehensive as we found out Friday night that they had decided to discontinue Megan's feedings again because she wasn't tolerating them - also her stomach was a little swollen. While this was a bit of a setback, they are hoping to restart her feedings this morning.

Throughout the weekend, both Megan and Rachel's heart rates have been very good with only a couple of drops / "episodes" each day. We are hopeful that this means that they will soon no longer need the CPAP to help them breathe easier. After a standard chest xray they noticed that both Rachel and Megan had a bit of fluid around their lungs and so have been receiving medication which seems to be helping. This might also explain why they lost a little weight over the weekend (Rachel is still about 3 pounds while Megan is about 2 lbs 12 oz).

 When we came in on Sunday, we noticed that each girl had made their Mom a Mother's day card, dutifully signed with their footprints (hey, its a start). Word is that they might have had a little help from someone on the nursing staff (just to check the spelling of course). Needless to say, Karen was very excited, and she really enjoyed her Mother's day gift from the girls ... she was able to hold Megan and Rachel together for the first time (without the CPAP as well). They were really content side-by-side, and showed none of the sibling antagonism that Karen had previously "observed" (hey, stay on your side, stop kicking me, its dark in here, ow! don't poke me ...). Anyway, it made for some very nice pictures (which I promise to bring in soon :-) ... who knows they might even end up on my home page).

 

May 17, 1996

Well, overall this week Megan and Rachel have done very well although there have been a couple very minor setbacks.

Megan started out the week on IVs again, but by Wed was up to full feeds again (syringe-fed every 2 hrs). She seems to be tolerating everything very well and has had very few heart rate drops / breathing episodes. In fact, she is now only being supported with nasal canula (short prongs) that provide less air pressure than the CPAP did. This is the least amount of respiratory support and hopefully means she will be completely on her own soon. Her weight is still only 2lbs 12oz though so they are adding some calories to her feedings with a couple of supplements.

 Rachel had a slightly more difficult time this week. They tried moving her to just the nasal prongs but after a day or so she started having heart rate drops and so they had to put her back on continuous CPAP. A chest xray confirmed that her lungs had decreased in capacity so it will probably be a couple of days before they try to "cycle" her off again. She was also a little pale with her red blood count being somewhat low, so she received a blood infusion (about 17cc) today. There is a possibility that she may be having a "reflux" problem. Basically this refers to a muscle below the esophagus that is not very strong in preemies - its normal function is to keep food "down". If it is immature than it can cause heart rate/breathing difficulties because of the stress it adds to feeding. Also often there is a tendency to not be able to keep food down (preventing weight gain) but so far there have not been any difficulties with this - in fact, on a more positive note, Rachel is up to 3lbs 2oz. They may decide to do a video "swallow" analysis next week though.

 Both girls had their first eye exams this week (don't ask about details - basically Karen told me that I did _not_ want to watch ... she showed me the "instruments" they were going to use and I quickly agreed). Anyway, the exams went fine - both of their retinas are developing but still immature (expected - implications are that they will be probably be nearsighted, at least for the first couple of years) but there are no signs of retinopathy (thankfully). Retinopathy (the way I understand it) occurs when the blood vessels in certain regions "overproduce", causing "ridges" that can eventually result in vision impairment or retina detachment and blindness. The usual treatment in severe cases is laser surgery to stop the proliferation of blood vessels. Both girls will have a follow-up exam in 2 weeks. Also, they both got good marks on (hopefully) their last follow-up head ultrasounds. Rachel's is still normal, and Megan's slight bleed has continued to resolve itself at a satisfactory rate.

 

May 21, 1996

Well, a lot (good) has happened since Friday. The girls had a very good weekend. In fact, they are now both completely off of any kind of respiratory assistance (yay!). Feedings are going well, although neither Rachel or Megan have really gained much weight. Karen was able to give both of them a bath for the first time on Sunday - they did real well and seemed to enjoy it for the most part. Karen also got to dress them in one of the numerous sets of matching outfits we have received :-)

They prescribed Rachel some antibiotic ointment for her eyes (for infection) but this seems to be fairly common. Heart rate drops and apneas are continuing to only be occassional so things are really beginning to look like they may be able to leave the ICU soon and spend the rest of their time in the transitional nursery (we hope). We are able to hold them every day now. Also, they have already agreed that when the girls are ready they will put Rachel and Megan together into the same crib (a first for Christiana).

 

May 28, 1996

Well, its been a very good week. Both Megan and Rachel are gaining weight consistently (3lb 1oz and 3lb 8oz respectively) and are still completely without any respiratory assistance. And ... on Sunday evening, they put both Rachel and Megan in a crib together and they are doing wonderful (I'll bring in pictures tomorrow). We are really excited as it looks like they will be going to the transitional nursery very soon.

One small concern ... on Friday, Megan's hemoglobin was a bit low so there is a chance she may need some blood in a day or two - however, so far she seems to be bringing her levels back up herself (albeit slowly). Given Megan's "history" with poor IV sites, we are hopeful that they will not need to give her any blood.

 

May 30, 1996

Currently, Rachel weighs 3 lbs 11 oz and Megan weighs about 3 lbs 2 oz. Also, they have started trying to bottle feed them once a day. Yesterday, Rachel was able to take about 1/3 of her feeding from the bottle and Megan took her entire feeding (26cc) by bottle.

 

June 4, 1996

Well, its been a rough couple of days but things are looking much better now.

On Wednesday, Rachel got sick and vomited, and breathed some of the fluid into her left lung. This plugged the sacs in the lung causing it to collapse (this sounds worse than it is - the collapse was a result of the blockage and not a hole so when the blockage is removed, the lung should reexpand and heal itself). She also began showing signs of infection. At this point, she had already been moved back to intensive care (NICU) and put back onto a ventilator to breathe for her. They also started giving her several antibiotics to treat the infection as well as stopping her feedings and just giving IV fluids and nutrients. Needless to say, this really took us by surprise, especially since Rachel had been the "slow and steady" one. On a more positive note, she reached 4 lbs on Wednesday as well.

 To encourage the fluid to leave the lung they have been giving Rachel chest therapy ("clopping") and deep suctioning her. She also was on a stomach pump for a couple of days because she had some air in her belly, but thankfully there was no sign of infection there or in her blood (only in her lung which could have developed after the incident). They also gave her a blood infusion on Saturday and this seemed to really help.

Yesterday (Sunday), things had improved enough that they were able to take her off of the ventilator and only use nasal prongs with a little air pressure. We were very relieved. They've also restarted her feeds and she should be on full feeds by tomorrow. Today they will discontinue two of the antibiotics but Rachel will need to stay on the ampicillin for the remainder of 7 days. They are hoping to return her to the transitional nursery in 24 hrs; however, they will not place her with Megan until the course of antibiotics has finished (don't want any little fingers tugging on IVs). In a couple of days, Rachel will be "worked up" for reflux - this refers to a weak muscle around the esophagus that allows stomach contents to be spit up frequently. They will do a video swallow test where they can measure and see what is going on and perhaps prescribe medication if it is necessary (and possibly other things although I'm sure what that would be just yet).

 Megan is doing very well (thank goodness ... I'm not sure what we would do if both girls were having setbacks). She is up to 3 lbs 9 oz and is taking most of her feeds by bottle (all of them the last day or so). We've had to change nipples a couple of times though; since she is getting stronger jaw muscles, some of the nipples allow too much milk to get into her mouth too quickly which tends to choke her (and cause multiple heart rate drops ... unfortunately, twice while "Daddy" has been feeding her ... and that's not something he deals with very well).

 That's all for now. While this has been a bit of setback, Rachel is certainly improving now and we are very hopeful that in a few days she will be back to concentrating on just eating, sleeping, and gaining weight.

 

June 13, 1996

Some good news, some concerns, and a surprise below ...

Rachel has continued to recover and is now back in the transitional nursery. Her lungs are still a bit hazy but she is breathing completely on her own and is receiving medication to help with the fluid in and around her lungs. She is on full feeds and is up to 4 lbs 3 oz. She will be off of the IV antibiotics this weekend. Yesterday they did a video swallow test with Rachel. Unfortunately, it shows that she has a weak epiglottis and is aspirating tiny amounts of fluid with every swallow. This means that she will not be able to be breastfed and that they will need to thicken her feeds with cereal to help encourage food to only go down her throat and not her trachea. It also puts her at increased risk for pneumonia. However, it is possible that as she gets older the muscle will grow stronger and the difficulty she is having will go away. She will have a follow up exam in a month so we are hopeful that this will resolve itself by then.

 Megan is doing very well and has increased to 3 lbs 11 oz. She passed her hearing exam last week (we just found out they had already given her one). They will also be doing a video swallow on Megan since she has also had a tendency to "spit up" and gag though not recently.

Both girls had another eye exam yesterday and everthing looks fine.

 Great news! ... it looks like Megan will definitely be coming home next week and possibly Rachel as well. We are not sure if they will come home together since Rachel just got back to the transitional nursery, but they are leaning towards letting her go home on medication and then just discontinuing it when she gets bigger.

 We are very excited and anxious to bring the girls home as soon as we can. We (and anyone who wants to be able to take care of the girls) will be attending a monitor workshop (both Megan and Rachel will have monitors attached to them for the first couple of months) and infant CPR class this Friday (Monitor 5pm. CPR 6pm).

June 21, 1996

Mom and the tiny twinsGreat news !!!!!!!!

Megan and Rachel were able to come home on Wednesday, Jun 19, 1996 after spending a little over 9 weeks in the hospital. Karen and I are "adjusting" to the new responsibilities but we are so happy and excited to finally have our daughters with us. It has been a difficult time but we have been so blessed ... God has been so good to us and so have the friends and family that He has brought into our lives to support and encourage us during this time. We are so very thankful.

 Some additional details of the last week's events ... It appears that Megan is having the same swallowing problems as Rachel. This means that both girls will need to be bottle fed a mix of milk and cereal for at least a month (until they can redo the test). Last Friday, we attended a monitor class (describing how to use the monitors for apnea and heart rate) and an infant CPR class. We had our first home health care visit - both girls are doing well but Megan lost a couple of ounces so they will probably do a follow-up visit in a few days. Rachel is now 4lbs 11oz. Megan is 3lbs 11oz. So far, they have only had a few alarms; however, last night, the monitor seemed to go off continuously (sometimes the sensors don't pick up very well on Megan when she is sleeping and breathing shallow). So ... the past two days have been a somewhat continuous cycle of feeding, pumping (Karen), changing, medication, monitoring and sometimes sleeping :-) Life is good.

 


Chris Pennington <penningt@asel.udel.edu>

Last modified: Fri Dec 19 23:26:17 EST 1997